16: No news is actually GREAT news

Two months have passed since my last post, and that's a very good thing.

Two months ago my new hematologist/oncologist called me a tortoise. And that's also a very good thing.

Today at my appointment with him we decided I was actually more of a slug.(Still a good thing, though not as poetic.) What that really means is that my test results are trending upwards (another good thing) but the overall graphs look more like the body of a slug rather than the upward slope of a tortoise shell. So, slow and steady I go. Overall it looks like the treatment is working, but I'll just probably be on it for a very long time. The good thing is that us slow-improvers are also more likely to stay improved for longer, too.

Life is beginning to look like what will be a new normal for me, for now at least. I have less stamina, lower muscle mass, and am pretty shot physically by 8 or 9:00 at night, but that's just fine. My days of closing the bars down has LONG been over! The drug side effects have lessened, I have fewer meds to take, and I've even started back at the pool doing aqua aerobics and aqua zumba classes! (Yay, summer!) Once it cools down a bit, I plan to get back to walking, easy hiking, and being more active again.

Pat at Winona pool for aqua aerobics class

The last good thing for this post is that I've been cleared to move forward with my shoulder replacement surgery which has been delayed for over a year. My orthopedic surgeon is booked for the entire last quarter of 2024 so we're hoping to sneak it in this coming September. (Still waiting for that call back!) Pre- and post-surgery will involve platelet, and likely blood transfusions, and healing will be a bit slower than it would normally be, but it will be worth it to be pain free eventually and maybe even get back to swimming and kayaking again. That's the goal.

Stay cool, friends. And watch out for those banana slugs.

Click here to listen to the Austin Lounge Lizards' song,
"Banana Slugs"

15: I am the tortoise

Boris the tortoise in the garden with Onosma

The past few weeks have been mentally challenging. Facing a decision that severely affects not only my life, but the lives of my loved ones, has probably been one of the hardest times I’ve gone through in my recent adult life. I have the option of getting a bone marrow transplant that could possibly offer a cure, or I could wait it out on the current regimen of drugs and hope for remission at some level. I’ve recently switched hematologists to Dr. Steven Schuster who studied at the Mayo Clinic and is a blood cancer specialist. He works incredibly closely with my Colorado Blood Cancer Institute specialist, Dr. Luke Mountjoy, also from the Mayo Clinic. Dr. Mountjoy encouraged us to look seriously at getting the transplant because he feels that aplastic anemia patients, especially those in decent physical shape, have an excellent chance of success, even at my age. Joel and I have spent hours and hours reading the documents supplied by CBCI on allogenic transplants, and we’ve combed the internet. I’ve joined three fabulous facebook groups: the Bone Marrow and Stem Cell Transplant Support Group, the Aplastic Anemia and MDS International Foundation group, and the Aplastic Anemia Trust Support Group (the British are absolutely lovely people when it comes to positivity and support!) and had long conversations with a new friend who just celebrated her first “re-birth day” following a transplant a year ago in New York. After weighing hundreds of factors, I’ve made the decision NOT to have the transplant. Thankfully, both Joel and Dr. Schuster completely support my decision, and I feel I have a rock star medical support team now that will guide me through the coming months with skill, compassion and common sense.

Having the transplant would mean that they completely wipe out your entire bone marrow and immune system and replace it with (in my case) an unrelated donor’s bone marrow. Over time, your chromosomes and blood type change to that of the donor’s. You lose ALL immunities from your previous life, and have to live in a sanitary, nearly solitary world for the first full year. It entails a 30-day hospitalization followed by another two months living in a rental home or hotel that’s within 20 miles of the transplant center (Presbyterian/St. Luke’s, Denver). Graft vs host disease (GVHD) is a constant threat from day 1, and can affect your skin, eyes, gut, and other organs, often requiring additional hospitalizations. GVHD can show up at any time – even many years later. During this first year, you can’t go out into public places, and your living surroundings have to be kept pathogen free. Your diet is often restricted, and your blood levels and vitals are regularly monitored. And you CANNOT do any gardening or be around plants of ANY kind – even indoors. (Do you know how many toxins and pathogens live in soil? Soil is filled with pathogens that cause botulism, tetanus, leprosy, E-coli, salmonella, Legionnaire’s disease, histoplasmosis, blastomycosis, sporotrichosis, coccidioidomycosis, and more, that can be lethal [especially to the immunocompromised] and are transferred through contact or inhalation of soil particles. Even now I wear a mask and gloves when doing any gardening at all.)

At about your one-year mark you start receiving your childhood immunizations again, followed by your adult immunizations (again). During year two you can start getting out and about but with extreme safety protocols as it takes about two years for the donor’s marrow to completely integrate with your own body systems.

Having a transplant would mean that 90% of daily household tasks would fall to Joel for the first year – cleaning, shopping, caring for the pets, pasture and lawn mowing, and keeping up with ALL the gardens. Amazingly enough (not really if you know Joel), he was 100% on board with whatever it would take. Love that man! It would mean selling our house in New Mexico (which is even in a more remote, rural area). It would mean 3 months of living in Denver away from our home, it would mean avoiding exposure to any kind of pathogen, and an incredible regimen of blood tests, medications, monitoring, and overall complete degradation of the outdoor lifestyle that we currently enjoy.

After meeting with Dr. Schuster this week going over graphs and charts, blood test results, and discussing the options, he felt that my decision was a sound one, and that given time, things would continue to slowly improve, hopefully by fall or winter. I will never be back to where I was physically (but hell – I’m turning 67 next week. Let’s be honest, I’ll NEVER be back to where I was!) He said that very likely this disease was slow to come on and is just as likely to be slow to go into remission. He said I am likely to go through recovery like a tortoise, slow and steady. He did NOT know that one of our favorite pets is a Russian tortoise named Boris (we've had him 24 years), one that is so long-lived that he’s in our will for our son Jay to take care of once we’re gone. Boris is patient, has a great personality, loves taking walks outside, and was “Pet of the Month” at Jay’s apartment complex in Westminster.

Boris was chosen May's "Pet of the Month" at
Covell apartments at the Promenade in Westminster.

Other good news – I’m down to weekly blood draws and monthly doctor visits, we’re heading to Capitan next week for 10 days, the garden is gorgeous, and the weather is stunning. All good things!

Our hottest, driest garden in nearly full bloom- May 18, 2024

So - this is where we are. We feel good about the decision - it's the right one for us, and we are forever grateful for all our supportive friends and family who helped us get to this point. 

Click to hear The Lumineers' "Where We Are"

14: Stuck

This is going to be a short but maybe not too sweet update. Basically, my numbers are stuck and just not budging either up or down to any great degree.

The weird thing is that I had a new bone marrow biopsy conducted last week and the results are frankly, very confusing. SOMETHING is working because the biopsy shows that my marrow is now "normocellular" at 20-40% (normal for my age) whereas back in December it was "hypocellular" at only 5%. That means that the marrow is doing its job, but the cells it's producing just aren't maturing into healthy blood cells. Lots of immature cells but somehow they can't seem to get to where they literally need to be - grown up and in the blood stream!

We met with our specialist Dr. Mountjoy last week and he was less than thrilled with where the numbers are now, at this three month+ mark. He seemed to think that if we were going to be seeing results, we'd be seeing them by now. We have another appointment scheduled with him next week to talk about the anomalous biopsy results, as well as option #3 (see following) for moving forward.

Options from here:

1. This is as good as it gets.  I'd be what they call "transfusion dependent" with lots of medication side effects and lots of continuing blood draws and infusions. Neither of us are thrilled with this option, but it's on the table, for now.
2. Try another round of anti-thymocyte globulin (ATG) followed by immunosuppressive therapy but this time they'd use a rabbit-based serum, which is more aggressive and has greater side effects. Many people have responded to a second round who didn't respond to their first round. Right now this doesn't seem to make sense when #3 is probably my best chance and closest thing to a "cure."
3. Bone marrow transplant. This is the scariest option, but it could also be the best possibility of getting back to some sort of normal life. The treatment is brutal and long, starting with a full round of chemo. The side effects can be extremely nasty and even dangerous (you basically are replacing your entire blood production system with someone else's!) We didn't really think this was an option because of my age, but more data are showing excellent results in people in their 60s and 70s. We've gone ahead and at least put a few parts of this process in motion by getting blood samples and cheek swabs sent off to the National Marrow Donor Program (https://bethematch.org/) which has global reach. The search is on!

We have so much to learn before we can make any decision on how to move forward. There are thousands of studies and case histories of cancer patients going through bone marrow transplant, but there are so few of us aplastic anemia patients that there just isn't enough clinical documentation to give us clear answers. 

So - we're hitting the books, the videos, the science-based websites and journals and will keep plugging along until we're more clear of the path ahead.

We remain vigilantly optimistic, and as any person who plants seeds knows, this is the truest form of organic optimism...

Flats of freshly sown, hand-collected, cold-stratified seed:
Datura quercifolia, Datura (mixed colors),
Asphodoline lutea, Stanleya pinnata, Clematis texensis,
 Amsonia jonesii, Hedeoma drummondii
 and Mirabilis longiflora.

Stay tuned - our path hasn't been determined yet, but we know that we'll figure it out as we go. I couldn't do any of this without you, Joel!

13: Another mixed bag - some good, some not so good. Life goes on.

The healing powers of the great outdoors

I was able to get in two, two-mile walks at Bobcat Ridge in the past two weeks. Didn’t go very fast or far, but it feels so good to be outdoors and get some exercise. Thanks to Irene Shonle and Cindy Catherman (and Vivi!) for the inspiration to get out and do it!

Stunning clouds at Bobcat Ridge

Anne!

My best friend from our NJ school days shows up tomorrow if today’s snowstorm doesn’t delay things too much. She’s lived in southern CA so long I’m not even sure if she owns any shoes OTHER than sneakers, hiking shoes and sandals. She’s coming to attend my mom’s memorial service on Saturday, and stay with me while Joel and Jay make a quick visit to our place in NM to check on things and play a bit.

Anne and I from 1982 in Boulder.

Critical levels

Two of the six markers in my twice-weekly CBCs (complete blood counts) have been holding relatively steady (platelets [blood clotting agents] and neutrophils [first line of immunity defense]) - until today, that is. Both have dropped again, so back I go onto the full regimen of prophylactic meds. The other four (white & red blood cells, hemoglobin, and lymphocytes) continue to drop, but at a rate much slower than  initially. I’ve now gone 3 weeks between whole blood infusions (where it used to be weekly or every other week). This is pretty normal as we’ve been told that the RBCs are the last to show improvement. They’ve been giving me magnesium (Mg) every Monday but are now adding potassium (K) to make sure I maintain adequate levels of these two key electrolytes.

They’ve also now added a monthly pentamidine inhalation treatment which is used to prevent a serious form of pneumonia, Pneumocystis carinii. I sit in a tent in the Respiratory Therapy unit at Poudre Valley Hospital, breathe in the medicine through a tube in my mouth and drool incessantly until the treatment is over. Great fun, indeed!

New lucky llama

A cousin in Mississippi sent me a “Llucky Llama” in a package of goodies last week. Unbeknownst to her, the first LL had just been passed on to a neighbor undergoing treatment for throat cancer. I see this new guy as one more talisman and good luck buddy to get us through this journey successfully.

My new llucky llama from Charlotte

Now you know - the Star Trek edition #5

Last Monday while getting an infusion, I looked around the center and realized how many of us sitting in those chairs, surrounded by poles and bags and support people, have ports implanted in our chests, just like the Jem’Hadar soldiers of the Dominion in ST Deep Space Nine, circa 2372 in the Gamma Quadrant. It was used to give them doses of Ketracel-white. “Ketracel-white (or simply white) was a chemical compound created to be an addictive narcotic that contained an isogenic enzyme. One of the active ingredients of white was yridium bicantizine. The Jem'Hadar soldiers of the Dominion were genetically-engineered to lack the enzyme which white provided, and required frequent doses of the drug to survive. The white also provided all the nutrients they required, alleviating them of the need to eat or drink.” So essentially, they couldn't survive without white, and without these ports it could not be so easily administered.

A Jem'Hadar soldier and his ketracel-white port

In our cases in 2024 in the Alpha Quadrant, these ports also allow life-saving substances to be more easily administered. I guess we can be considered soldiers in the fights for our lives. I'm always thrilled when real life mimics the technology of science fiction!

New test results today - not where I wanted to be, but you can't win every inning, I suppose.

Click to play: Wrong Way Feelin'

12: Still waiting...

I don't have a lot new to report but there have been some events in the past few weeks that are worth sharing.

I’ve now graduated to blood draws twice a week instead of three times/week. This indicates that things have stabilized a bit.

I haven’t needed platelets in over a month – perhaps we’re done with those transfusions?

Because of the cyclosporine treatment, I’m still needing magnesium infusions about once a week.

My red blood cells haven’t been responding, so I got a whole-blood transfusion just over a week ago. I’ve been super weak and have no stamina, so I’d hoped a bag or two of fresh blood would perk me up – it did for a few days and Joel and I got out for a few walks on nice days. I realized that what I really need is to get more exercise so that I can get my blood and oxygen flowing, but I’m so out of shape that it’s really hard to do much more than a short walk. 

A paradoxical situation from which an individual cannot escape
 because of contradictory rules or limitations.

Speaking of exercise, after a bit of discussion my doc agreed that I could start back to the pool again for self-guided fitness exercises. I'm still too immune-compromised to be in a crowded class, but he agreed that getting in more activity would be good for me physically, and I know that being in the water again will be good for my soul. Yay for the pool!

Speaking of good for the soul, my best from friend from forever ago, Anne, is coming to visit for a few days. I asked the doc if I could have a glass of wine with dinner with her, and he said, “A glass, yes, a bottle – no. You gotta live your life.” Yay for that!

Validation

Last Wednesday I was having a bad day and during my blood draw, my nurse Karen Briggs hung out and talked with me until the results were in. It seemed that nothing was going well, that all these drugs and feeling badly and not being able to do anything was leaving me  feeling completely helpless and frustrated. I loved her empathy in that moment. She didn’t try to make me feel that things would get better, and she didn’t give me false hope. She understood what frustration and stress are like and offered some constructive (destructive?)  ideas: go to one of those places where you can smash things (with proper protection, of course!), or just go somewhere and scream as long and loud as you need to. I now understand that sometimes you just don’t want people to tell you that things will work out - that everything will be fine in the long run. Reminds me of telling a kid to calm down when they’re in the middle of a tantrum- it never works. Instead you want people to recognize the shit you’re going through and validate your fears and frustrations and give you hugs and f-bombs in sympathy. Because that’s how you feel, and it’s real. Sometimes you just feel like you're alone and trapped.

Click to watch Beverly Crusher realize
she's alone in a shrinking universe

Spiritual connections

In an earlier post I talked about my friend and artist, Vickie Krudwig, and the amazing Phoenix Rising painting that she gave me. Well, her generosity abounds and continues with a meditation box that she just made for me because something inside told her I needed it . Here’s how she describes the box and her inspiration for the box:

“One of our very dear friends was diagnosed with a serious autoimmune blood disease. I felt helpless- I pray for her and her family and medical team. She has a fondness and connection to the Man in the Maze image, so I decided to make a small tabletop meditation box for her. The red and white beads and dots represent healthy red and white blood cells, and the circulating blood elements that are so important. I added my (Man in the Maze) earring to the center of the little canvas in the middle of the box, along with specific silver Milagro charms. I hope the box helps her center and feel peaceful.” Vickie and I definitely have a deep connection because she received the vision to create this box right about when my mom died, and she had no idea why the tug was so strong.

End of an era

My mother died on February 18, just 2 months shy of her 99^th birthday. I'd been visiting often on her last days, and on Sunday I’d planned to leave at 4:00, but as I went to say goodbye for the evening, I got the feeling that she wasn’t going to make it through the night. I sat back down on the bed with her, and 20 minutes later, she took two gentle, long breaths and that was it. She’d actually been preparing for this since before my dad died in 2010 – her memorial service was planned, her financial affairs in order, and most of her possessions had already been given away. When a person dies there's usually a million details to take care of, but in her case so much was already settled. And though these past two weeks have been stressful, I'm grateful for all her pre-planning. Her memorial service is March 16 in Fort Collins… it’ll be nice to get together with family, even under these conditions.

My mom - Laurane Thorn.
Obituary and memorial service information here.

11: Hematology for dummies

We’re just about at the 2-month anniversary of this blog, so thought I’d take some time to talk very simply about the science behind my diagnosis and treatment.

I’ve recently been reading a bit about hematopoeisis,”the formation of blood cellular components. All cellular blood components are derived from hematopoietic stem cells. In a healthy adult human, roughly ten billion to a hundred billion new blood cells are produced per day, in order to maintain steady state levels in the peripheral circulation.”

Billions. Hundreds of billions. That’s a lot of blood cells.

My diagnosis

As those of you who’ve followed my saga from the beginning, you know that it was discovered following routine annual physical blood tests last October that my bone marrow had nearly ceased producing blood cells (my blood cells were down to 5% while normal for my age group would be around 34%). I was diagnosed with aplastic pancytopenia (aplastic anemia), “a severe hematologic condition in which the body fails to make blood cells in sufficient numbers, and is associated with cancer and various cancer syndromes. Blood cells are produced in the bone marrow by stem cells that reside there. Aplastic anemia causes a deficiency of all blood cell types: red blood cells, white blood cells, and platelets. (source)

My latest CBC test results.
Note WBC, RBC and platelet counts

A basic graphic on how blood cells are formed and differentiated.

My treatment plan

To put it very simply: in December I underwent immunosuppressive therapy (anti-thymocyte globulin [ATG] along with cyclosporine) conducted basically to eliminate the “killer” (cytotoxic) T-cells that were destroying my bone marrow. Following the 5-day ATG treatment, I began a new treatment regimen of daily eltrombopag (along with cyclosporine, both of which I'll be on for at least a year.) This combination will hopefully help my bone marrow regain normal functioning again.

Joel helped me understand the process this way:

The current theory on autoimmune diseases is that “helper” T-cells are targeting cells for destruction that shouldn’t be destroyed. To use a contemporary metaphor, “helper” T-cells carry proteins that they put on “intruders” (viruses, bacteria, etc) – like a tracking device - which then signals the “killer” T-cells to destroy them. Cyclosporine (a med used for transplant patients to prevent organ rejection) is designed to limit that protein (or tag) production. So, the process was/is: kill off as many “bad guys” as possible in the first attack (ATG), limit the damage that the remaining “bad guys” can do (cyclosporine), and build up all the good guys in the bone marrow (eltrombopag). 

Though it seems I’ve been on this path for ages, in reality it’s actually been just over a month since I started the eltrombopag. According to all the studies we’ve read, true results won’t really show up until about 3 months in. So for now, I need to be patient and look forward to positive signs, hopefully by early April. 

Some interesting graphics

As a human develops, stem cells are produced in different areas of the body. In utero, stem cells are produced in the organs. After birth, stem cells are produced in the bone marrow, but the specific locations change over time with a person’s age. (Human umbilical cord contains an incredible number of stem cells. If you, or someone you know is pregnant and interested in donating cord blood cells, please share this link.)

Hematopoiesis by age

Hematopoiesis by location in older adults

How it feels after nearly ever blood test, and in which my bone marrow is The Anomaly?

Click to play - from STTNG "All Good Things"

10: Bad news, good news: the food and drink edition

Hair

Bad news: My hair started falling out last week. Not in big clumps or anything, but enough to be alarming and I’m hoping that it slows down sooner rather than later. The weird thing is after going through all my medication paperwork combing (see what I did there??) through the side effects, all I could find was “excessive hair growth” as a possibility with cyclosporine. One person I talked to (in her 70s) said she had to start shaving her legs again. But my doc thinks it’s probably from the combination of low blood counts on all levels and for such an extended time.

Good news: At first it was a shock, but after being around so many chemo patients on the Cancer Center 2^nd floor it’s actually a pretty normal sight there, and interesting to see how many different ways people are dealing with it. I know I don’t have the facial bone structure to pull off a classy look, so I may have to just go for wild and crazy if that time comes – we’ll see. We had a woman at work a long time ago who lost her gorgeous long tresses, and chose to go with purple, pink and shiny silver wigs until her natural hair grew back.

Blood counts

Bad news: CBC (complete blood count) and CMP (complete metabolic panel) results were rather poor, so I ended up getting 2 units of platelets, 1 unit of whole blood and 1 unit of magnesium.

Good news: Joel sat with me through the longest infusion and we re-learned how to play backgammon (he won 2 of 3 games), and finished my third book of the month. These are all things I never took the time to do before the diagnosis.

Chicken Soup redux

Bad news: well, there just isn’t any bad news when it comes to chicken soup!

Good news: Back in post #8 I mentioned a high school friend, Patti, whose mom brought me chicken soup one time when I was sick. I’m friends with Patti on facebook, but we’ve had no direct communication for 49 years – seriously! When our mutual friend, Anne, told her what was going on with me, Patti read the blog and insisted on making and sending me her chicken soup – all the way from NJ! So last Sunday she spent all day cooking, and on Monday morning shipped off the frozen soup on dry ice. We just had it last night and holy smokes, it was the best chicken soup I’ve ever had! So, I firmly believe that today’s slightly better blood test results (no infusion needed) were the result of Patti’s “Jewish penicillin.” She made enough for us to have 2 more meals of it, so I’ll be conducting a non-scientific study to see if that theory continues to hold true.

Patti's chicken soup with Joel's inaugural loaf of sourdough
 (more on that in the next update)

More non-alcoholic alternatives

Bad news: I know that Dry January ends tomorrow but looks like we’re going to have a dry 2024 from the sound of things. With that in mind, we continue to explore alternatives. Our attempts to find decent de-alcoholized wines have not yet borne fruit. So far, we’ve tried a rose and sauvignon blanc from Giesen Group Winery of New Zealand. We still have a Merlot to try, but I’m not holding my breath. Maybe it’s my taste buds that are messed up from all the medications, but to me the sauvignon blanc tasted more like lemon juice than wine. (I ended up using it in a recipe that called for both dry white wine and lemon juice.) The rose was slightly more passable, but I could only drink it while eating a very strong, soft cheese at the same time. Joel was a bit less critical, but still – nothing beats a good wine! On the other hand, my friend Lisa understands my love of both good wine AND Star Trek and suggested this, though definitely not non-alcoholic:

Klingon blood wine
available here

Good news: At the risk of sounding like a couple of alcoholics, we also love good tequilas. So, when we heard good things about Danny Trejo’s tequila alternative, we ordered a bottle from California. The first thing we noticed was the aroma – definitely nothing like tequila. Then I mixed up a small batch of margarita mix, added the “tequila” and still, all we could smell was that odd smell, completely destroying the concept of a margarita. Luckily, while buying NA beers at Wilbur’s in Fort Collins, an employee pointed us to Ritual – Zero Proof Tequila Alternative. It lists its ingredients as, “blue agave flower, Mexican lime, tropical guava, cracked sea salt, black peppercorns, capsicum fruit, prickly ash, green bell pepper” and prepared with charred oak and mesquite smoke. Though it doesn’t exactly taste like tequila on its own, the aroma is somewhat reminiscent, and the bottle clearly says it’s meant to be used in cocktails. I mixed up another batch of margaritas using Ritual, and they really were quite decent!

Here's my recipe:
2 oz fresh lime juice
2 oz tequila alternative
2 oz non-alcoholic orange “liqueur” (delicious – recipe here)
2 oz (or more) sparkling water (your choice of plain or flavored. I found a Safeway brand labeled “margarita” which was pretty good)

Of course, I used blood oranges to make the “liqueur” – couldn’t hurt, right??

9: Rough ride

“Sometimes it’s just going to be fucking hard.” (Loni G)

I was going to post an update last weekend but just found things a bit overwhelming. So, I’m going to be brutally honest here – this past week or so has been rough, and finding the bright spot I usually like to end the update with has been difficult.

On Wednesday, I was prescribed a third daily prophylactic (an anti-fungal) because my WBCs and neutrophils are still in the toilet. I picked up the RX, but when the pharmacist warned of serious complications (irregular heartbeat in particular) because of all the other meds I’m taking, I chose not to start taking it on a Friday because I didn’t want to deal with complications on a weekend. Silly me – there were other things to worry about!

The day before my legs had started swelling, so I was told to keep my feet elevated as much as possible and to start wearing compression socks. (I actually don’t mind wearing compression socks, so went ahead and ordered some fun ones from Amazon. Plus, they keep me warm.) Then on Friday I got home from the blood draw and running errands, went to the bathroom to wash my hands and saw that the right side of my face was swollen. (That “fat face” I’d worried about when taking the steroids early in the game never came about, but now – here it was.) I left my oncologist a voicemail, then sent them a picture. At 2:30 I get a call from someone in the office wanting to know how quickly I could get to a hospital to have an ultrasound, and how far I was willing to travel. At 2:50 I got a call that they could get me in at 4:00 into the UC Health hospital in Greeley – could we make it in time? Minutes later we’re in the car headed east. Even though an accident and attendant looky-loos delayed us, we made it, arriving at the front entrance at 3:50. Seems they were seriously concerned about a blood clot from my newly - installed port. Good news/bad news - no clot was found.

The next morning (Saturday) both sides of my face are now swollen. Of course, it’s a weekend. I called the on-call oncologist because my med paperwork warned that swelling of the face can lead to blocked airways. She advised I go to the ER for more tests, including a CAT scan. So, off we go to the PVH ER - again. Four hours and many tests later, results are all negative so we go home. But at least I’m not worried about my airways closing up. (Small wins – we take them wherever we can find them.)

On Monday I get a message from the doctor’s office checking on the swelling, and I end up telling them about some other side effects I’m starting to experience (I’m really starting to feel like shit at this point.) I tell them I haven’t wanted to start the anti-fungal, and get a stern response that if I don’t take it and do get an infection, it would be very difficult to treat and could be very serious overall. In fact, infection is the leading cause of death for people with AA. So, now I’m on yet another med. Total: 8 medications, 6 daily intervals, 16 pills/day. And I was the person who barely remembered to take my daily vitamins!

The Phoenix

Here is the bright spot. I have an artist friend, Vickie Krudwig, (https://www.harmonyhousestudio.com) from whom we’ve bought quite a few paintings. This is how she describes her art: “Harmony, Peace, Love, and prayerful meditation are what I hope art lovers will feel when looking at my art. Whether my art is impressionistic or abstract, it’s purpose is to heal hearts and transform the spirit.” So when she sent a note out to a few of us that she was cleaning out her studio and was looking for new homes for a few of her unsold pieces, I gasped when I saw this one…

She calls it, “Morning Gathering” and is about how all of us are connected to the earth, but I saw it as my phoenix – my talisman for this journey. To me, it signifies rising from the fire, a rebirth, and all the small figures in the piece are all of you who are supporting us as we make our way to recovery. (Thank you, Lauren, for that incredible insight.) Vickie says that her paintings are “… meant for certain individuals, who connect intimately with the paintings. I like to think my paintings find their owners!” And the moment I saw this piece, I knew immediately that it would be an important part of our lives.

8: A port, blood chemistry, new meds and chicken soup

The long-awaited port

I finally got that port I’ve been pondering. It was implanted just below my right clavicle during a surgical procedure at the beautiful Long’s Peak hospital (Longmont) on Tuesday, January 9. All went well but I had to have 2 units of platelets before I could have the surgery. Funny thing was the nurse commented on how low my platelet count was, and I responded that it was the highest it had been since all this started. The doc said I could use the port right away, so had the infusion nurse access it for blood draws the next day, as well as for a 4-hour, 2-units of whole blood infusion the day after that. The area above the port where the incision was made is super sensitive and sore, though the port appears to be just fine. By last Friday when it was time for another blood draw, I just felt that both the tender area and I needed a break, so the port won't be used again until Monday’s blood draws and magnesium and electrolytes infusions. 

Long's Peak Hospital (Longmont) is only 6 years old.
They had the earliest slot open, otherwise I'd still be waiting
 to have the port inserted.

Blood chemistry

Speaking of infusions, I’m still getting blood draws 3x/week, which are currently scheduled through May 3! Nearly all are still occurring at the UC Health Cancer Center on Harmony, which sadly many of my local friends are familiar with. I usually get the results within 20 minutes, so they have me wait to see if I need an infusion that day or not. If it’s a shorter infusion that doesn’t need to be special-ordered, I can often get it the same day. Whole blood needs to be irradiated and lymphocytes removed, so usually isn’t available until the following day. Plus, the infusion itself is a 4-hour process. So far, I’ve had 4 units of platelets, 4 units of whole blood, 1 unit of magnesium and 1 unit of electrolytes. Monday I’m scheduled for magnesium again.

Each reclining infusion chair has these controls.
Joel said my infusion days count as "spa days,"
but I insisted that if there's no foot bath, it doesn't.

Joel is keeping a spreadsheet of all the test results (of course he is! – he’s the spreadsheet king!) and is now tracking 35 different tests. The most critical are white and red blood cells, and platelets. Specific data on magnesium, potassium, bilirubin, ionized calcium, and more, are monitored closely for many reasons, and some are to make sure my liver and kidneys aren’t being damaged by the cocktail of drugs I’m taking. Interesting to note in the graphs below when the infusions of blood and platelets occurred.

We've not figured out why my WBCs increased
 after Christmas. Hopefully they will again soon.

You can see when I got whole blood in the hospital on 12/20
and again on 1/10.

This shows the uptick of platelets after infusions
 on 12/20, 12/30, 1/5 and 1/8.

Since my WBCs were so low this week, they’ve now decided to add an anti-bacterial prophylactic med (levofloxacin) to my daily regimen which already includes 4 anti-viral pills/day, and 4 immunosuppressive pills/day, along with the Promacta^® (for low platelet counts), a magnesium supplement, and my usual high blood pressure med. The scary thing is that this newest addition is so powerful it’s used to treat PLAGUE and ANTHRAX!! Good god – and I have to take this every day for how long?? My poor gut! So of course, now I’ve added a daily pre- and probiotic! I’m just hoping they don’t add an anti-fungal, too. Basically, I have absolutely no immunity to anything, at the worst time of year when EVERYTHING is going around. So hopefully the weather will warm up enough and the wind will stop blowing so I can go walking outdoors with my friends again – soon!

My friend Fade lent me this book, along with several others.
And my friend Anne highly recommends the mini-series on Apple+.
We'll have to watch it after I finish the book.

The healing power of friends and chicken soup

On a much more positive note, I’d like to give a shout out to my neighbors and friends who’ve dropped off or shipped goodies to us. It’s been a perfect mix of skin care products to make me feel good, books to read, movies to watch, coloring books to occupy my time, chocolate to indulge in, Christmas decorations to brighten up the house, all kinds of food, including homemade jams and sourdough bread.

I have a friend who lives in NM who asked what she could do for us. She’s Jewish (I was born in a Jewish hospital, went to a Jewish kindergarten, and spent a year of junior high attending bar- and bat mitzvahs) so I asked her for a chicken soup recipe. I asked for this because I KNOW there’s something about chicken soup that’s amazingly healing. Back then there was a girl in our “group,” Patti, with whom I sometimes had a difficult relationship with. (Now that I look back on it, I’m really not sure why – but I know it was me, not her.) I’ve never really been one to get sick – even common colds seem to avoid me (tell that to my damn aplastic anemia!) – but one time I had a terrible flu and was laid up for days. Even though Patti and I weren’t always close, her mother cooked up a batch of chicken soup and dropped it off. I quickly recovered and will ALWAYS attribute it to Patti’s mom’s soup! So, much to my surprise, a couple of days after I asked my NM friend for a recipe, this showed up, packed in ice, all the way from NYC! (A place where I spent a lot of time in the 1970s, living just 45 minutes away by train.) Katz’s Delicatessen is both locally and nationally famous for its Jewish classic offerings, from pastrami sandwiches to noodle kugel. It’s been in business for over 135 years, and Ava figured, if she was going to send chicken soup, she was going to send a classic!

7: Everything is New

New meds

I started my new meds last week which are supposed to slowly begin the bone marrow rebuilding process. It’s a relatively new, very targeted medication called Eltrombopag sold under the trade name Promacta^® by Novartis. When my docs first came up with the treatment plan the folks behind the scenes immediately got to work applying for financial support through the Novartis Foundation. (You know those tv ads that say, “You may qualify for free or reduced cost medications?” Come to find out, it’s a real thing.) Since we’re both retired with an income solely dependent on Social Security at the moment, the folks at UCHealth were able to make an application for us for full financial assistance, and we qualified!

Welcome packet from Novartis for Promacta®

New schedule

It feels like I have NEVER had such a full calendar, even when I was working. Unfortunately, everything revolves around blood tests and unknown infusion needs. On the other hand, everything is relatively close to home – all within a 40-minute drive, and no need at this point to go to Denver. Most everything occurs at the UCHealth Cancer Center on Harmony in Fort Collins. Once in a while we run into someone we know there. It’s an interesting encounter as we look each other in the eye and recognize the unspoken truth behind our presence in that space.

New experiences

I have now officially been kicked “upstairs.” Up until now, blood tests were being conducted at a variety of labs depending on where we could get appointments over the holidays. Now, all of my blood tests and infusions are taking place on the second floor Infusion Center at the Harmony Cancer Center so I can see some sort of routine becoming part of our future. I had my first longer session yesterday… blood tests at 9:30, results by 10:00, then magnesium and platelet infusions ordered, delivered and administered by noon. I finally got out of there around 2:30 and found the experience to be both enlightening and humbling. By midday, every seat was filled. Most of the patients there are getting chemo or related infusions and most of them seemed to be long-termers, meaning they knew the routine and come prepared. They arrive with bags of comfort items – blankets, headphones, books, laptops, food, phones, chargers, etc. Some have support folks, others are alone but know the routine and settle in pretty quickly. There’s conversation between some patients; some lively and others muted. The nurses and staff are incredibly upbeat, with constant smiles and offers of help. There’s a Spanish-speaking patient who's visited by Spanish-speaking translators and staff. There’s a very loud guy talking about his personal miracles to another guy who’s just finishing his very last treatment. There are two women playing a new card game. There’s a volunteer handing out warm blankets and delivering lunches, and the nurses are all thanking the lady next to me for bringing in Mitchell’s donut holes. It’s a microcosm of a world most of us will never be part of, but the reality is that we probably all know at least one person we love or care for who has, or is now part of this world of “the second floor.”

New beers

Joel and I are serious beer lovers, going all the way back to volunteering at the third and fourth Great American Beer Festivals in Denver together in 1985 and 1986. I have a total of 953 badges on the social media app Untappd, have checked in 710 times for 505 different beers, 434 of which are IPAs. So, when I was told I’d need to stop drinking “indefinitely,” we decided to enter the world of nonalcoholic beverages, starting of course with IPAs. So far in this new journey, we’ve tried 8 different types, and have decided that a rating of “that’s not horrible” keeps the brew in the running, for now. Here are our top non-alcoholic choices so far:

• Fremont IPA
• Clausthaler Dry Hopped IPA
• Lagunitas IPA
• Sam Adams Just the Haze IPA
• RationAle New England Hazy IPA
• Best "dessert" beer: Deschutes Black Butte Porter
  
  

  

  Our top choices for non-alcoholic beers, so far. 

  
  

Next stop – non-alcoholic tequilas??