Some Life Lessons Take a Lifetime

Patience and Pacing

If you let go a little, you will have a little peace.

If you let go a lot, you will have a lot of peace.

If you let go completely, you will know complete peace and freedom.

Your struggles with the world will come to an end.

~ Ajahn Chah, A Still Forest Pool

I believe that challenges (including people) show up in life because there is something I need to work on, learn, or accept. Sometimes I'm an exceptionally slow learner.

Patience and self-pacing have never been my strong suit. I like to live fully and make the most of every heartbeat: no regrets.. don't take life for granted.. live out loud.. expand my comfort zone.. learn something everyday.. help others.. push through fears.. you get the picture. Living with urgency has served me well. I've always had more interests than time. I lived a full, active life; I was highly productive and able to achieve many things. Sure, I'd crash periodically. But I could always recover and carry on.  

Pacing for Dummies

Then along came blood clots and Polycythemia Vera... my body said "No more!" to my career in community development at a particularly difficult time in the real estate and lending markets (circa 2007).  I went from fast-forward to the ICU. No one saw it coming. 

It took my body more than 3 months to recover from the surgery and my normal energy never returned. When I went back to work, I was hard-pressed to work 8 hours; I would collapse on the sofa as soon as I got home. Less than a year after the surgery I had to resign from my job. I was crushed!

I then kept my brain active with some part-time consulting and a lot of volunteer work that had flexible timelines. I also got more involved with my kids' activities. 

I believe the illness occurred to make me slow down and to re-direct me to be more present for my children during the teen years. I became the mom that could cart smelly kids to/from sports practice and help at school functions that took place during business hours. It became a gift for my soul. 

Pacing for Big Dummies

When I pushed through the extreme fatigue, headaches, and other symptoms of the Polycythemia Vera, the Universe devised a new challenge: Behcet's Disease (a rare auto-immune disorder). 

The physical manifestations were excruciatingly painful. Both the disease and the treatments caused severe physical issues that limited my mobility. For a time I needed a cane to walk, couldn't climb stairs, and certainly didn't leave the house unless absolutely necessary. I gained 60 pounds (and had the steroid "moon face"). I was so miserable, self-conscious and depressed. I became resigned that old age wasn't in my future. 
That slowed me down big time. I tried to make the most of "good days" even though a productive day would cost me a couple of days in bed afterwards. 
Apparently, that wasn't enough.

Patience and Pacing for Obtuse Big Dummies

This February came the curveball we didn't anticipate: aggressive secondary myelofibrosis. My bone marrow is no longer able to produce enough blood. Without a blood stem cell transplant, I could look forward to maybe two years of a transfusion-dependent life. 

Since none of my siblings "matched" me, we put our hopes and faith in the US and International Marrow Donor registries. 

The waiting was a real test of patience. I felt like the crocodile in Peter Pan who swallowed the clock: tick tock, tick tock, tick tock pounded in my head.

Then my chance for a miracle: a 22 year old young man from Germany is my perfect match! Talk about a 2nd chance!

45 Days Post-Transplant

The "typical" allogeneic transplant (donor cells) shows engraftment between days 10 - 25 after the transplant. 

What is time anyway?

My new stem cells are still not fully-engrafted. The whites are all donor cells. But they aren't producing platelets nor red cells yet. I'm still transfusion dependent; I need platelets every week and red blood cells every couple of weeks. 

The doctors and clinic staff remind me that it will take a lot longer because my bone marrow is hard (full of fibers), making it difficult for the stem cells to find a place to settle in. Over time, the bone marrow should return to its original spongy form (at least enough for a successful transplant). 

Here is where my patience is thin. Objectively I know that my body is starting over ~ in producing blood to support the organs. 

The feeling of helplessness and lack of control can be overwhelming some days. I try visualizing spongy marrow, talk to my precious donor cells, and count my numerous blessings. I'd eat broccoli and brussel sprouts if it would help (they would need to show me studies first). 

I do know it will all be worth it in the end. And I try my best each day (some day's "best" is better than others). One thing that helps A LOT is reinforcement from family, friends, and the medical staff that this is just part of the deal; I haven't done anything wrong; and resting is the best thing to give those fighting stem cells the chance to dig in and do their jobs.

I'm hoping to become a calm, cool, collected person through this experience. One who feels and exudes patience. One who enjoys life reasonably without creating physical burnout the next day. Patience and Pacing. These are my lessons.

A Port for Weary Veins

Port of Pireaus, Greece

When I think of a Port, I first imagine a place near land for boats to find shelter from rough seas or load and off-load goods and passengers.  

The second thing I imagine is a glass filled with a dark, heavy, rich dessert wine made in Portugal.

This coming Wednesday, I will experience another kind of port - up close and personal. I'm having a port installed in my chest. But it is for loading something other than libations.

When I went in for my second transfusion of Red Blood Cells (RBCs), the nurses told me it was time to get a port installed. My good veins for IVs are shot due to phlebotomies and Remicade infusions over the last few years. There is scar tissue and some veins have flattened out. Other veins are covered by lipomas (benign fatty tumors) on my arms and legs (fat isn't limited to cellulite, my friends!).  

The port installation is an out-patient procedure with local anesthetic. I do hope they will give me something to calm my nerves, because watching people run tubing through my chest will trigger some of my natural anxiety.

IV Educational Moment:
In preparing for this, I've learned that there are three types of intra-venous (IV) catheter mechanisms: Ports, PICCS, and Lines. Each is used for different medical purposes.

Ports:  Ports are funky-looking things that are implanted just below the skin's surface on the upper chest. A tube connected to the port is fed through a central vein towards the heart. Ports can stay in ones body for years if necessary. Ports are good for chemotherapy, transfusions, and delivering medication and other necessities. A special needle is required to connect to the port. Ports have lower infection risk because there are fewer points of entry to the body than the tubes from PICCs and Lines.

How Does A Port Work?


PICCs:   Peripherally Inserted Central Catheter 
I had one of these when I had the whopper hospitalization in 2007. They can draw blood, give medication and liquid nutrition without sticking me every time. A purple tube went from my right arm into a vein that led to my heart. I was unconscious when it was installed, but I do remember that when the nurse pulled it out it was no big deal.
PICC lines are not used for chemotherapy. 

Lines:
There are 2 types of lines, tunneled and not tunneled. Tunneled catheters / lines are used for chemo, blood draws, delivery of nutrition, medication, etc. They are not for long term use.

An on-line friend shared this brief summary of these 3 types of IV catheter approaches.


I'll post a photo or two of Marina's Port (sounds nautical, doesn't it?!) on Thursday or Friday.

When a Match = Life

I see lots of ads for matching companies -- match.com, e-harmony, christian singles... 
They sell the dream of happiness for life by promising to find your compatible, perfect match.

Here is a way to help someone (like me) find a perfect match that saves life -- and there are no monthly membership fees:   Bone Marrow/Stem Cell Donation 

First Fact:
A bone marrow or stem cell donor is determined by HLA (Human Leucocyte Antigens), NOT blood type.

Why match the HLA?
HLAs are protein markers which sit on all our cells. The immune system recognizes them and therefore does not attack them as foreign or infection. 

When the donor and recipient have matching HLAs, the likelihood of stem cell rejection or the new stem cells attacking the host body (Graft vs. Host Disease) is decreased. 

The ultimate match is when the patient and donor share 10 out of 10 HLAs. Most transplant centers require a 10 out of 10 or 9 out of 10 match for a standard transplant.

"Haploid match" is when the patient and donor have half of the HLAs in common. Biological parents and children of the patient are haploid matches. 
These transplants can also be successful with special care to decrease risk of Graft Vs. Host Disease (GVHD).

Get more info here:  HLA Match education

HLA Match Priorities

The priorities for my HLA match are as follows:

1.  Full-match sibling  

2.  Full-match Unrelated Donor (10 out of 10)

3.  Partially-matched family member 

4.  Cord blood

All four of my siblings did the cheek swab test through bonemarrowtest.com, as I did.
It cost $175 each, yet we got the info quicker than waiting for the doctor referrals and insurance approvals.

There is a 25% chance that a biological sibling is a perfect match. With 4 siblings, we figured that we had a good chance. One brother and one sister are haploid (half) matches with me and full matches to each other; the other two are identical matches to each other.

The doctor said that my son, Alexander, would be a haploid-match with me, and his stem cells would be preferred to my siblings because of Alex's youth. 

They also prefer younger male donor to younger female donor, so Katrina is excluded if Alex is willing to help his mom. In light of his upcoming car repair bill, I think he can be persuaded (wink, wink... both kids asked if they could be donors when this first came up).

We are now in the process to search for a 10/10 Matched Unrelated Donor (aka MUD) through the National Marrow Donor Program. 

The process takes 2-3 months, and the doctor believes that we will find a donor.

If you are between 18 and 44 years of age and interested in being a Bone Marrow/Stem Cell donor, check out these options:

bethematch.org

deletebloodcancer.org

They both contribute to the national and international donor databases. 

In the circle of life, I'm reminded that we receive what we put out in the world. Donation of bone marrow/stem cells, blood, plasma, and organs are the ultimate Random Acts of Kindness. Give with love and know that your gifts are received by the patients (and their families) with love and immense gratitude.

peace & love,

Marina