I'm home today waiting on my nadir, which comes about 10 days after a chemo treatment, and if we catch it and keep me healthy enough, hopefully I can avoid being hospitalized (as I was on the corresponding Nadir Monday/Tuesday/Wednesday last time).
Two things can happen at the Nadir:
1) Having no platelets--being a hemopheliac, basically--in danger of spontaneous hemorrhage (knocks, cuts or bruises would bleed uncontrolled internally or externally). For this the easy solution is (a) don't risk falls, bumps, or cuts (b) keep my Monday appointment for a complete blood count (c) infuse me with platelets if I'm low (platelets are inert little things and anyone can donate to me, regardless of blood type). Last time it was nosebleeding and sore gums.
2) Having no white blood cells (being immune compromised). For this the plan is (a) stay away from non-family members (eg went to church Saturday and wore a "stay away" face mask (b) don't go out much and (c) monitor my symptoms.
They have to hospitalize me if I show any signs of sickness at all (fever of 100.4 or more, or any combination of symptoms that look any worse than "really tired")
The idea is they have to give me a chemical immune system while we wait for my personal one to bounce back.
- antibiotics if they suspect any kind of infection (no time to test)
- antivirals (but this is on reason why I'm continuously on acyclovir) if they suspect a viral infection
- antifungals (if they suspect a fungus)
Sunday, November 26, 2017
Saturday, November 18, 2017
Medical: Chemo 2.2.2.2
Second course (Rituxan+Hi dose Ara-C)
Second round (Nov of Oct/Nov/Dec)
Second phase: hospitalization at BIDMC to receive not-so-high-dose-Ara-C
Second dose of Ara-C coming very soon
I was admitted last night as scheduled (lucky me: private room with 3 chairs, table & city views!), and have had my first-of-4 doses of Ara-C
The new news this morning is that my "liver numbers" have continued to fall, whereas last time they spiked at this excact phase--and caused the whole process to grind to into glacial-mode.
With the liver numbers falling, I can likely stay on the every-12-hours schedule and be out of here by Sunday (last time it was every 21 hours and ruined Monday too)
Second round (Nov of Oct/Nov/Dec)
Second phase: hospitalization at BIDMC to receive not-so-high-dose-Ara-C
Second dose of Ara-C coming very soon
I was admitted last night as scheduled (lucky me: private room with 3 chairs, table & city views!), and have had my first-of-4 doses of Ara-C
The new news this morning is that my "liver numbers" have continued to fall, whereas last time they spiked at this excact phase--and caused the whole process to grind to into glacial-mode.
With the liver numbers falling, I can likely stay on the every-12-hours schedule and be out of here by Sunday (last time it was every 21 hours and ruined Monday too)
The pre-meds (anit-side effect stuff) have begun.
Wednesday, November 15, 2017
Chemo 2.2.1
Second course (Rituxan+Hi dose Ara-C)
Second round (Nov of Oct/Nov/Dec)
First injection (outpatient Rituxan prelude to weekend Ara-C in hospital)
Sitting waiting for
Second round (Nov of Oct/Nov/Dec)
First injection (outpatient Rituxan prelude to weekend Ara-C in hospital)
Sitting waiting for
- Inspection, (blood labs & vitals)
- Injection (big bag of Rituxan)
- Direction (what to expect this weekend)
Friday, November 10, 2017
Super Immuno Man
I was finally discharged Thursday at 5pm, after tests that morning showed I had the white blood counts 90% higher than ordinary mortals, thanks the Neulasta-stimulated stem cells finally kicking into high gear. I could be a superhero without a mask, but would have to avoid fistfights as my platelets we're still half normal.
Next time I think the goal will be to get my neulasta shot earlier so that its spike in production more closely matches in time the nadir at which the chemo has wiped out the old crop.
Sunday, November 05, 2017
Medical: Neulasta & No lumpsa
Neulasta
I just figured out how it is that Neulasta (which boosts white/immune cell production) can be OK with Lymphoma: because it stimulates stem cells to ripen *into* white blood cells. It does not stimulate white blood cells to grow or divide.
Recall that Estrogen is good for breasts, but too-much-of-a-good-thing with breast cancer, and that Folate (a B vitamin) is good for blood (cures pernicious anemia), but too-much-of-a-good-thing with leukemia. In both cases "good for _____" turns into a corresponding "deadly for _____ cancer"
But Neulasta, (a brand connoting that it is a neutrophil-stimulant that is long lasting (once per chemo cycle)) is "good for [production of neutrophils (white blood cells)]" that is NOT cancer-encouraging, and so does not fit the pattern.
The reason: Neulasta stimulates (cancer-free) stem cells to "ripen" into white blood cells.
This is also why stem cell transplanting works: take out my stem cells (if they can be assumed "normal") wipe out all blood-cell offspring (including lymphs and leuks) and then put the stem cells back and tell them "ripen real fast"
I will get my blood counts again tomorrow. Last time, it showed "higher than normal" neutrophils (stimulated by the Neulasta) but still lower than normal lymphocites...which the chemo has reduced somewhat faster than the Neulasta, at least initially, could replace them.
No Lumpsa
For the first time since April of this year, the lump on the cancer side of my neck (the right) is actually smaller than my lymph gland on the left side. This feels good...I can actually shave on that side (being careful not to nick) in a way that I haven't been able to since maybe June.
I don't want to get over-excited but it is good news. I finally seem to have gotten a "powers of ten" response (maybe a 100x or 1000x reduction) instead of the "division by 3" reduction that I saw in the first rounds of chemo
I just figured out how it is that Neulasta (which boosts white/immune cell production) can be OK with Lymphoma: because it stimulates stem cells to ripen *into* white blood cells. It does not stimulate white blood cells to grow or divide.
Recall that Estrogen is good for breasts, but too-much-of-a-good-thing with breast cancer, and that Folate (a B vitamin) is good for blood (cures pernicious anemia), but too-much-of-a-good-thing with leukemia. In both cases "good for _____" turns into a corresponding "deadly for _____ cancer"
But Neulasta, (a brand connoting that it is a neutrophil-stimulant that is long lasting (once per chemo cycle)) is "good for [production of neutrophils (white blood cells)]" that is NOT cancer-encouraging, and so does not fit the pattern.
The reason: Neulasta stimulates (cancer-free) stem cells to "ripen" into white blood cells.
This is also why stem cell transplanting works: take out my stem cells (if they can be assumed "normal") wipe out all blood-cell offspring (including lymphs and leuks) and then put the stem cells back and tell them "ripen real fast"
I will get my blood counts again tomorrow. Last time, it showed "higher than normal" neutrophils (stimulated by the Neulasta) but still lower than normal lymphocites...which the chemo has reduced somewhat faster than the Neulasta, at least initially, could replace them.
No Lumpsa
For the first time since April of this year, the lump on the cancer side of my neck (the right) is actually smaller than my lymph gland on the left side. This feels good...I can actually shave on that side (being careful not to nick) in a way that I haven't been able to since maybe June.
I don't want to get over-excited but it is good news. I finally seem to have gotten a "powers of ten" response (maybe a 100x or 1000x reduction) instead of the "division by 3" reduction that I saw in the first rounds of chemo
Wednesday, November 01, 2017
Medical: All the stuff I and mine are taking
My Meds
When they give you Ara-C (Cytarabine), they give you Zofran (antinausea) and a steroid at the hospital. And they start you on Prenisolone eye drops, because the Ara-C comes out in your tears.
Then they send you home with:
Steroid Eye Drops - prevents inflammation as chemo comes out in tears
Nulasta - 1 shot to boost good white blood (but not those of lymphoma)
Claritin - reduces/prevents pain of white blood cell production pressing outward from inside marrow
Colace - working to end constipation caused by anti-nausea
Acyclovir - (anti-viral) now particularly important to prevent old chicken pox from coming back as shingles as my white blood count drops (which test show, it has)
Vaccinating the Herd
Also this morning, the kids are off to the family doctor to have their first vaccinations. This was always a potential source of marital tension between me (generally pro-vax, but infant-vax skeptical) and Mrs Blogger (who always took the anti-vax posture in our discussions) which we "solved" by postponing indefinitely.
We're actually negotiating with the BIDMC's Infection Control office, since the kids are not infants, not adults, not going to camp, not college students, not themselves sick or immuno-compromised, and not medical professionals, they're actually in a strange lacuna* of the recommendations, where they have aspects of each but are not quite perfectly in any category.
BIDMC cares because they've got a whole isolation ward (7 Feldberg, where I was this past weekend) with people with basically no immune systems, so the rules are:
1) No children under 12 during flu season, regardless of immunization status
2) No visitors over 12 unless immunized
3) No visitors who've had a live flu vaccine within 2 weeks of vaccination
Everyone pretty much agrees the kids now need to be immunized against "the contagions"
MMR
DTaP (for the P)
Varicella (Chicken Pox)
Seasonal Flu
And maybe
HiB (bacterial flu)...though health workers are not required to have this
Pneumococcal (bacterial pneumonia)...though health workers are not required to have this
simply because these are possible threats both in the ward and later while I'd be recovering at home
But probably not these, even though they are required of health workers:
Meningicoccal (more for college, camp, & microbiologists)
Hep B (blood/needle transmission is not what we're worried about)
And probably not
Polio (rare in US; not worth a fight over either way)
Rotavirus (max age is 8 months, so we're way past that)
Hep A (rare in US; not worth a fight over either way)
And certainly not
HPV
Notes on 7 Feldberg (the lymphoma/leukemia/stem cell ward)
Along one side (with the best views of Boston) are the isolation rooms for people who are:
1) Neutropenic (super low immune system, for whatever reason)
2) Autologous Stem Cell (low immune, but at least it is your own)
3) Allogenic Stem Cell (low immune, risking rejection/fights with a transplanted immune system)
These rooms have
1) A sign on the door explaining the condition of the person inside (see above)
2) Any additional warnings (e.g. "no food by mouth")
3) An air-lock style entry. An outer door with a change/wash anteroom and then the inner room
Basically a visitor to the rooms above must:
1) Enter an outer unsecured door (to the whole ward); no kids or flowers beyond this point; There is a "family room" for visitors who do not meet the criteria of the inner ward door.
2) Get cleared through a secured inner ward door
3) Check in at reception nurse
4) lock all personal belongings in a locker in "the solarium"
5) re-vest (not sure on this)
6) enter outer individual door to personal room's airlock
7) do something clean
8) enter the individual room
This past weekend, in the semi-private rooms that flank the Solarium (#4) my visitors were only subject to 1 thru 3.
* a perfect use of the word "lacuna" (Latin for lagoon, meaning "unfilled space or interval; a gap." ) if there ever was one.
When they give you Ara-C (Cytarabine), they give you Zofran (antinausea) and a steroid at the hospital. And they start you on Prenisolone eye drops, because the Ara-C comes out in your tears.
Then they send you home with:
Steroid Eye Drops - prevents inflammation as chemo comes out in tears
Nulasta - 1 shot to boost good white blood (but not those of lymphoma)
Claritin - reduces/prevents pain of white blood cell production pressing outward from inside marrow
Colace - working to end constipation caused by anti-nausea
Acyclovir - (anti-viral) now particularly important to prevent old chicken pox from coming back as shingles as my white blood count drops (which test show, it has)
Vaccinating the Herd
Also this morning, the kids are off to the family doctor to have their first vaccinations. This was always a potential source of marital tension between me (generally pro-vax, but infant-vax skeptical) and Mrs Blogger (who always took the anti-vax posture in our discussions) which we "solved" by postponing indefinitely.
We're actually negotiating with the BIDMC's Infection Control office, since the kids are not infants, not adults, not going to camp, not college students, not themselves sick or immuno-compromised, and not medical professionals, they're actually in a strange lacuna* of the recommendations, where they have aspects of each but are not quite perfectly in any category.
BIDMC cares because they've got a whole isolation ward (7 Feldberg, where I was this past weekend) with people with basically no immune systems, so the rules are:
1) No children under 12 during flu season, regardless of immunization status
2) No visitors over 12 unless immunized
3) No visitors who've had a live flu vaccine within 2 weeks of vaccination
Everyone pretty much agrees the kids now need to be immunized against "the contagions"
MMR
DTaP (for the P)
Varicella (Chicken Pox)
Seasonal Flu
And maybe
HiB (bacterial flu)...though health workers are not required to have this
Pneumococcal (bacterial pneumonia)...though health workers are not required to have this
simply because these are possible threats both in the ward and later while I'd be recovering at home
But probably not these, even though they are required of health workers:
Meningicoccal (more for college, camp, & microbiologists)
Hep B (blood/needle transmission is not what we're worried about)
And probably not
Polio (rare in US; not worth a fight over either way)
Rotavirus (max age is 8 months, so we're way past that)
Hep A (rare in US; not worth a fight over either way)
And certainly not
HPV
Notes on 7 Feldberg (the lymphoma/leukemia/stem cell ward)
Along one side (with the best views of Boston) are the isolation rooms for people who are:
1) Neutropenic (super low immune system, for whatever reason)
2) Autologous Stem Cell (low immune, but at least it is your own)
3) Allogenic Stem Cell (low immune, risking rejection/fights with a transplanted immune system)
These rooms have
1) A sign on the door explaining the condition of the person inside (see above)
2) Any additional warnings (e.g. "no food by mouth")
3) An air-lock style entry. An outer door with a change/wash anteroom and then the inner room
Basically a visitor to the rooms above must:
1) Enter an outer unsecured door (to the whole ward); no kids or flowers beyond this point; There is a "family room" for visitors who do not meet the criteria of the inner ward door.
2) Get cleared through a secured inner ward door
3) Check in at reception nurse
4) lock all personal belongings in a locker in "the solarium"
5) re-vest (not sure on this)
6) enter outer individual door to personal room's airlock
7) do something clean
8) enter the individual room
This past weekend, in the semi-private rooms that flank the Solarium (#4) my visitors were only subject to 1 thru 3.
* a perfect use of the word "lacuna" (Latin for lagoon, meaning "unfilled space or interval; a gap." ) if there ever was one.
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