A Craving

I’ve told this story to a few people so forgive me if you’re hearing this for a second time.

When I was first diagnosed with Amyloidosis and I started my first four rounds of chemo therapy I had a craving come over me that was so strong I was often time left in tears. What did I crave?

Babies…

There was something about the smell of a newborn baby, the new life, the endless possibilities that lay before them. There’s an energy they give off in the early months that’s intoxicating and I believe can be healing. Not healing of the body but healing of the mind, well, for me it would have been, I think. I recall telling my husband about it and wondered out loud if I could only go to the nursery at the hospital and sit in a rocking chair and hold a newborn for a little while. Feeling that if I could just do that once or twice I could find some calm in my storm.

I never did get to hold a baby during that time. I had some friends who had a baby in that time span but they weren’t allowing people to hold their child in the first few months. I recall going to their home to see the baby and drop off a gift. I asked to hold her and was told I couldn’t. Selfishly I cried for a week over the rejection. If they only knew what just a few minutes would have meant to me, would they have let me hold her?

Regardless that time has passed and my craving still kicks in sometimes. But now I do have that opportunity to hold a little one now and then. Just last night I got a chance to indulge my craving by holding a little bundle while her mother ate dinner. She was so warm and squishy, and smelled heavenly. As I suspected it would, my spirits were raised as I sat, so grateful to her mother for allowing me to hold her child.

Even today I’m experiencing the residual baby high I got last night and I’m not sure if I know how to explain the feelings I have. I don’t know if I am in the end stages of my life or not. If I get a heart transplant then the answer would be no, but if I don’t the answer would be yes. So when that little voice in the back of my head is telling me to soak up what I can because it may be my last opportunity the craving to be around new life comes over me.

It’s ridiculous to think that by some sort of spiritual osmosis in holding a baby I can impart some wisdom they might come to realize when they’re older. I know that’s a silly thought and not possible, but if it were? When I passed I wouldn’t really be gone, a piece of me would be with every one of the babies I had the pleasure to love and hold close to my heart. Like I said it’s just silliness on my part…

I’ve had the opportunity to do that with my own children. I held them close and soaked up all the new baby energy. I remember how sweet each of them smelled after they were born. Now in their adulthood I can see that I was a good mother, a good steward of their lives, and I raised three amazing human beings. When I’m gone I will live on in them and live on even more in their children. I truly hope I’m here to see their children, my grandchildren, but if I’m not, I will most certainly be with them all in spirit.

I’m going to ride this baby high all day. I have an amazing dinner planned for my family and today I’m feeling fabulous!

One Year

I just realized that the first of November was the one year anniversary of my blog! WOO HOO! What’s happened in a year’s time?

Doctors, drugs, faith, family, food (lots of food!) and photos mostly. I was listed for heart transplant, good news! My heart is a little weaker than it was when I started, not so good news. I still take a couple fists full of pills every day…LOL…that’s not likely to ever change.

I’m still working on curbing my anxiety/PTSD and I think I might be winning the battle on that. I’ve found peace in my faith and truly believe the Big Guy up there is totally in charge of my life. If I have done nothing else in one year’s time I have completely surrendered myself to my God and given Him all the power over my life. I live and breathe to serve Him. I’ve come to realize that I need a community and I think I found one. My purpose is to serve others and I can do it in so many ways.

Even with my limited mobility (no driving, and being tethered to an oxygen concentrator 24/7,) I can always use Uber or Lyft if I can’t find someone to give me a ride…even way out here in Wyoming, can you believe it?!

 

The Machine

I have a machine in my bedroom that breathes. Well, it sounds like it anyway, it has a gravely kind of inhale, then it exhales in sudden, rhythmic bursts. Attached to the machine is an opaque green plastic tube, 15 feet, 25 feet, often times 40 feet, and sometimes 65 feet. In addition, there is a clear plastic cannula at the end of the green tubing that is currently allowing three liters of oxygen to to flow into my nose and hence my lungs and blood stream.

On our way back from Mayo Clinic last Saturday we stopped at a store in the airport and I bought my first set of Beats. It didn’t occur to me at the time of my purchase just how important my pretty little pink urBeats Earphones were going to be.

That machine runs 24 hours a day, seven days a week. Some times it’s the only thing I can hear. The OCD in me starts to count the inhale and exhale of the machine, then it’s 2am, 3am, 4am; 254, 255, 256, 257…

They ran a lot of tests at Mayo this time; 15 appointments in three days. The outcome of some were great, but as always some of the results weren’t the greatest. My bone marrow biopsy showed no “minimal residual disease” meaning my MRD is totally negative, no Amyloidosis, still in remission! The heart catheterization didn’t yield the greatest results though, that one showed my heart is getting worse. Not very fast by most heart failure standards, but like watching grass grow, it’s moving along at it’s own pace. It probably has something to do with the fact that I’m in heart failure because of the Amyloidosis and not by means of a more common reason. The doctors made some minor medication changes and said I will require supplemental oxygen for the time being. Living at almost 6,000 feet probably doesn’t help with my oxygen intake. We did agree, because of the slow nature of my heart failure, I didn’t have to return in three months, I could wait six months and return in April, thank God for small favors. Of course if something with my health were to dramatically change between now and April I would have to return sooner.

More about this machine; it drives me crazy! I find myself going into other rooms where I can’t hear it as well. Unfortunately, there isn’t a room in the house I can’t hear that thing inhaling and exhaling ad nauseam. In come the pretty little pink earphones…you knew where I was going with this. Not only do they completely obstruct the sound of the machine, listening to music curbs my anxiety and I can fall asleep listening to my favorite tunes, BONUS!

Being tethered to a machine can be a bit of a drag, especially when you get yourself wound up in your own oxygen line prepping dinner and almost trip and fall on your blind dog. I’m not stuck in the house though, I have a little portable machine that I can carry around with me when I go out. How fun does that sound? NOT! I don’t mind it really, I understand why I need it, but it’s not exactly the new Fall accessory I wanted to add to my wardrobe this year. That being said, I feel better with more oxygen in my system and I have more energy to do some of the things I like to do.

 

My Sweet Dotty

It’s been a rough week going back and forth to the vet. It started with Dotty getting her teeth cleaned. She had a cough for about four days following but otherwise seemed ok. Upon calling the vet about the cough I was told this was normal and it it continued over the weekend to bring her back in. Yesterday we noticed that her breathing was very labored, then today she started shaking uncontrollably. Thor was already at the vet for his teeth cleaning so they asked me to bring Dotty in when I picked up Thor. After a thorough exam and a couple x-rays the vet discovered the problem.

Dotty is in Congestive Heart Failure and her heart is very enlarged. In addition she has pockets of water she retaining all over and she has a mass in her gallbladder that they aren’t sure what it is.

The vet has started her on some medication to help get the water out of her system as well as meds that will help her heart. The prognosis isn’t great though. If we caught it in enough time we may have 24 months with her, but if we didn’t it might be as little as 12 months.

I’m just heart sick over all this. She is my first dog that was all mine. I’ve had her since she was seven weeks old and she’s been by my side for over eight years. She’s such a sweet girl with an amazing temperment, always gentle, always happy to see you when you walk thru the door. She’s can be sassy at times and has a feisty little attitude. I don’t know where to put these feelings about losing my little four legged companion, but I do know that she has had a wonderful life, has been loved deeply, and spoiled like a princess. All of those things will continue until she takes her last breath.

The Pills

pills

The pills are getting to be overwhelming. I’m afraid to even count them at this point because I really don’t want to know the total number I swallow every day. I know I take enough potassium every day to kill at least three adult men, I take enough diuretics to float a boat, and enough blood thinner for an army. This Sunday morning ritual of refilling my pill containers with my weekly pills is too much sometimes. I do it, but I certainly don’t enjoy it. I don’t actually have a single pill organizer anymore, I have to use three separate ones that I’ve marked, morning, afternoon, and evening. The single pill organizers that have multiple containers for daily pills don’t come in a large enough size for everything I take in a single day.

<SIGH>

I need to get over this weird pill anxiety. I’ll have to take pills like this for the rest of my life, so I’d better get over it. Taking them causes anxiety though, thinking about taking them does as well, but despite that I do take them as the doctors have prescribed because I know they’re keeping me alive.

So there you have it, my Sunday morning, distributing my pills for the week, then laying them out so I don’t forget. I have Buddy (from The Secret Life of Pets) watching over them for me! I know I’m fortunate to have good doctors, and the means to pay for my medication, I know it could be so much worse than I feel some days.