living her best life #41…what’s up doc?

In response to a text sent her earlier today from nurse niece Jen, Pat texted back…

Thanks Jen. I only got bits and pieces of your text, but I got the gist of it. Was trying to send an email to update everyone but couldn’t. Was anxious about coming to MN, but now that we’re here, everything is good. Mayo Clinic is pretty amazing and impressive. Was there from 8 a.m. to almost 5 p.m.! After consulting with doc, did more tests…nothing invasive, just blood & urine. Doc here and at home are encouraged by my numbers and think I’m a good candidate for transplant. Follow up appt tomorrow. Also met with a social worker to go over psycho part of this whole ordeal. He and a nurse went into more detail about what actually happens during transplant. I’ll try to get an email out…in the meantime can you let everyone know we’re doing okay? Thanks again for checking in. Love you.

…hugs, jen…for updating pat’s network of supporters…

………hugmamma.

 

living her best life #39:…pit stops along the way

That’s what the weekend was for Pat…and Brad, her husband.

A pit stop.

An evening with my husband and me was just one of many pit stops along the race car track that is now Pat, and Brad’s, life. On their way to The Mayo Clinic in Minnesota, they paid us a brief visit…to recharge and refuel…for the road ahead. It’s sure to have many challenges, both known and unknown.

 As we made our way to where we would meet Pat and Brad in the baggage claim area at SeaTac Airport, I hurriedly scrambled for a piece of cardboard I’d stashed in my purse. It was the backing for a Mother’s Day card my husband had bought for his sister. While walking along, I managed to write their last name on the cardboard with a pen. Thank goodness there were only 4 letters. I filled them in with squiggly lines trying to make the name more visible. Beneath it I drew short, squat arrows, filling them in as well. 

I kept a lookout for them at the top of the escalator. Hubby meanwhile wandered off to check on something. Spying Pat and Brad at the foot of the escalator I quickly called for my husband to “Hurry up! They’re here!” Holding the sign above our heads, we pretended to be their limousine service come to pick them up.

Walking towards one another we all laughed at my crazy antic. There were warm hugs all around as we exchanged our hellos. Moving toward the luggage carousel, the guys ahead of us, I motioned for Pat to join me in sitting down on nearby chairs. I did so because she seemed on the verge of tears. 

Pat revealed she’d been frustrated and angry the last couple of weeks. As she said later when we again had a few moments to ourselves…Pat realizes “I am fighting for my life!” And she is. The prognosis for multiple myeloma is 7 years. I was reminded of that in a recent TV piece about Tom Brokaw, a former news anchor. He too is battling MM. 

Something else Pat said which resonated with me. After spending time with family and friends, she said “They get to go back to their own lives. I’ll never go back to my life as it had been.”

It’s true. Pat’s new life is still unfolding.

The most important people in my sister-in-law’s life now are the doctors and other health care providers who are working to save her life. They are her lifeline. Literally.

Unlike my husband, I am a fatalist. Beneath my positive veneer lies an acceptance that life is finite. I can only credit it to being raised by a single parent, a mom whose love seemed conditioned on how she was feeling. If things were fine with her, she was fine with me. If not, her love could be taken away. Nonetheless, she was all I had so I made the best of it. A survival mechanism that has served me well. As well as can be, despite some obvious drawbacks…like trust issues.

In a text message sent off to Pat this morning, I wrote…

Thinking of you. And you’re wrong. I haven’t been able to go back to my life. Physically, yes. Mentally…you’re always…and I mean always in my thoughts. Keep wondering what you’re doing…how you’re feeling…what you’re thinking. Same way I was with my daughter. If I lived in Hawaii, I’d probably make a nuisance of myself. Hope you can come and spend a few days before you go back to Minnesota for the transplant. Let me know how it’s going…

Earlier I’d texted…”Call me if you need to unload or just need a boost. Think of me as your booster shot.”

In response, Pat texted…

Can’t thank you enough for last night. It was just the boost that I needed to be able to face this coming week. I feel like this is just the beginning which is hard to fathom after 16 weeks of chemo. 

We appreciate everything you’ve done so far and your unwavering support and love. I look forward to seeing you and my brother again and I can’t wait to see your remodel. And yes…I can pull weeds! (In my text I had said she could help me pull weeds when she came again. And I’d pay her!)

A little levity is just the “spoonful of sugar to help the medicine go down…the medicine go down” as touted by everyone’s favorite English nanny, Mary Poppins.

When you think about it…we’re all dying. A few know when and how; most have no clue. The lesson for all of us?

…live our best lives…right here, right now…

…after all…the glass IS half-full.

……..hugmamma.

journeying towards her best life…#16

Yesterday was Pat’s second chemotherapy treatment.

Following the IV injection, shot, and meds she is given at the doctor’s, she has to take more meds at home. To which she said yesterday “…waiting for Brad to get home from Costco with more ginger juice, so I can get the stuff down.”

Aaarrrggghhh! Don’t know if I could stomach meds AND ginger juice. Makes me gag at the thought.

In a general email to her siblings, Pat went on to say…

Today’s treatment was the same as last week. Right now I feel okay…a bit fuzzy.

Learned more after talking with the Transplant Coordinator who, by the way, graduated two years ahead of me from the same high school.

Small world…and getting smaller all the time. 

Pat continued on…

Treatment here at home will be done in 4 week cycles.

Each cycle starts one right after another, assuming there are no complications…like me getting sick. The cycles will run through 5/12/15.

I’ll then have a bone marrow biopsy to determine if I’m well enough to travel to the mainland for a stem cell transplant.

The earliest we would travel is probably around June. We’ll likely be there 3-4 months, including recovery time.

Kaiser usually works with the City of Hope Hospital, but because my situation is unique they recommended I go to The Mayo  Clinic. Paperwork  will be completed by Kaiser before they contact The Mayo Clinic. So we’ll get that out of the way and be ready to travel by June.

As for how she’s doing, Pat said…

My blood cell count after the first treatment looked fine…some numbers were slightly lower than when the test was done in December. However they were all within the normal range. 

The numbers will likely go down with subsequent treatments. 

The fact that I felt pretty good after the first treatment is also a good sign. However that too may change as I undergo more treatments. 

Basically, the nurse said that my body may eventually tire of all the meds. 

I’m hopeful the side effects won’t be too bad, but I’ll deal with that if and when the time comes.

And, finally…

Brad’s home. Time to finish taking my meds. I might lie down for a bit. First, I have to call Julie and wish her a Happy Birthday.

Talk to you all soon and thanks for the continued prayers. We’ll continue to keep you informed.

Love you all…always.

Pat

As you can see, the path will not be a rosy one. Nonetheless, Pat is determined to take it one day at a time. Along the way she continues to display her sense of humor and fun which makes her so lovable.

P.S. During today’s treatment, I couldn’t find anything interesting on the tube. So I settled on watching a repeat of a UH [University of Hawaii] volleyball game. I had my eyes closed but continued listening…vaguely. The voices I heard through the earphones kept changing abruptly, so I opened my eyes. I soon realized that the woman in the next chair was changing my TV channels while she changed hers.

I guess she didn’t get the memo about covering the signal on her remote…

…gotta love pat.

………hugmamma.