The last few days have been very rough… until yesterday. Yesterday was a good day.
Yesterday, my sister was able to take me on a stroll through the hospital. It felt like flying! I hadn’t been down for so long… It was a real treat. We laughed and enjoyed it to the max.
My kidneys stopped doing their job for too long.
Kidneys are so important it turns out… I was flooded with extra fluid (30 lbs worth), and had a very hard time breathing. My lungs were sponges, soaking in a vat, unable to get much air in and out, especially if I tried to recline. Or laugh. Or talk in full sentences. In came dialysis.
Sadly, in between feeling like a water-balloon and feeling great from dialysis, there was the worst experience- having the dialysis line placed. I had to lay back to a certain angle and hold still… they would have put the line in my neck, but I couldn’t lay flat enough. They went for the hip, putting the line in my femoral artery. I couldn’t stop sputtering, gasping, and coughing up a bloody swamp. There was a CPAP machine (up until that moment Papsee had been my friend, helping me sleep and breathe at night), there was panic, the room was hot, everyone was moving too slowly, and I was drowning. As the Dr. pointed out later, I wasn’t actually drowning- but the feeling was there.
Will I need dialysis for life?
Since my kidneys were fine before this all started, and I’m young, the doctors are expecting them to recover, and for dialysis to be short lived. That being said, tomorrow they will put a more permanent dialysis line in my neck and remove the one from my hip. Today I even heard the words “Out patient…” Hopefully early next week I can go home and only need outpatient care.
What about the cancer treatment?
Vyxeos has done its month long chemo-course destroying the marrow. My white blood cell counts are on their way back, and the platelets and red blood cells are rebuilding as well. My last bone marrow biopsy was inconclusive as to whether the blasts are setting up shop again or not, so our best bet on knowing if we can move forward with transplant, is to wait and watch the blood numbers return. The better my numbers of white cells, platelets and hemoglobin, the fewer blast are in the marrow. In a few weeks there will be another biopsy to be sure…. But, before we can go back to dealing with cancer my kidneys must kick in again!!
How are the kids?
The kids’ spring break has been a full of activity. Our things from California have been finding their place in the new house, and old toys have been rediscovered. My wonderful family has been keeping the kids busy with trips to the park, library, zoo, gym, etc.
I haven’t had the chance to see the kids face to face as much because of the intensity of my discomfort as well as some coughing on their part. Right before the kidney situation, however, I got a window into James and Liam’s thoughts. Liam- as he sits next to the hospital bed coloring a picture for me: “Mommy, I’m going to make you a picture that is so good… SO GOOD… it’s going to make you better.” I wish it worked that way. He wishes there’s something he could do…
On another occasion, alone with James: “Mommy I figured it out!! I think you got cancer because you had so many babies!” He was so excited. To this I said: “That’s an interesting idea, but not how it works. Babies can make their mom sick sometimes, but that is not what happens in cancer… Babies can hurt mommies just like a rock can hit you and hurt you… but this cancer- it’s from my own cells. I’ve had it written into the seeds of what made me. There’s nothing you or your siblings have done to cause this!!!!” He left. And I cried.
My sweet, sweet boys.
- That our home would be a haven of peace for the kids- and everyone who comes through to help or visit- a place of rest and joy despite of the circumstances.
- For my kidneys to heal quickly!
- For my eye to heal (yep, that’s still a thing… there’s a blind spot in my left eye that makes it very hard to see screens and depth.)
- That I somehow make it out of this with NO repercussions… a cancer free, side effect free, medication free life!