What a Difference a Year Makes...

I don't really know if I believe that time can heal all wounds.  Time can certainly give us perspective, a different way to see things, to learn.  I do believe that often times it gives us the opportunity to grow into, grow up, grow through, grow over, and even grow between what we are and will eventually become.  But I don't really know that it heals...I think the healing is done by the Master and perhaps time is one of His tools that allows us to learn as fast as we are able, that gives us the opportunity to grieve and hope and fear and hope and take a tiny step into the dark, in faith, believing that He is there, the Light, to hold us, to heal us, to make us all better if we will just let Him.  And all along our paths are those who give us light and hope...who are instruments in His hands...seeking to give aid and comfort to fellow travelers.  Angels from another realm or angels in mortality...it doesn't really matter, for they are messengers of Heavenly Father's love just the same.

Today I had my 1 week post chemo checkup and labs with Dr. Thompson.  It was such a terrific visit.  What an angel he is.  I think of the first time that I even heard his name...it was the day I learned that I probably had cancer, although they didn't actually tell me that, just that they were consulting with him and that he was an oncologist.  He was the the one that had suggested that they get a biopsy done on the liver mets so they could really know what they were dealing with and who to send me to see before they actually sent me to see someone else.  How profoundly wise was that counsel...even though he'd never seen me, I wasn't his patient, and who knew where this was going...he managed to get that all done and get path reports before I saw him a week later.  Knowing what I know now - those were miracles...each and every one of them...but we were such novices then, and so scared.

He and his staff have been so supportive.  Always cheerful, sober if need be, full of information, but even more of hope...not the false, glib, "it'll be all right" kind of hope...the kind that reminds you that each day is precious and that the hands you're really in knows all things.

I happened to have an appointment with him on Halloween day last year.  The entire office was dressed in costumes.  It was fun.  I was seeing him for the results of my 6 week scans following 6 weeks of doxorubicin.  I had the distinct impression that the doxy hadn't been effective but I didn't know...there really wasn't a way to "KNOW" anyway.  However, Dr. Thompson had my labs and scans along with the radiology reports.  He knew that my "tumors have just thumbed their noses at all that poison we pumped into them and grew anyway."  However, our relationship was new and he was just about to deliver some very difficult news to me and Rich.  Out of deference, kindness, charity, and compassion, he took off his costume before entering our room.  While his news would have been much more welcome had it been working, the fact is that we knew it wasn't and we were grateful for his honesty and willingness to find a different agent...gem/tax.  As we prepared to leave, he asked us, with a sly smile, if we'd like to see his Halloween costume.  Of course I wanted to and so did Rich - it turned out to be a Viking helmet with green hair! Lol!  Later that night four more angels unexpectedly arrived at our doorstep...my brothers - Mike, Derk, Brad, and Jim had driven for two and a half solid days to come visit for only two days!!!  Their timing was perfect!  And how I needed them!  They brought cheer, laughter, family, joy, memories, and love.  I wish I had a camera going for their entire time here!  How precious is time....

Today Dr. Thompson said that he knew that the chemo last week had been pretty rough.  I must have looked somewhat skeptical...I thought maybe my labs showed some pretty rough numbers...but he quipped that my purple Mohawk curl was drooping and not standing very straight! Lol!  He has been through the no hair, the wig, the hats, the funny straight short hair, the no eye brows, the no eye lashes, and the crazy Mohawk that has defied any kind of treatment to do something other than stick straight up!  When July 15 (leiomyosarcoma day and also known as the purple dragon) rolled around I told him I was thinking of dying it purple in honor of the day and Rich and he both said they thought I ought to ... and I did ... So I'm a 64 year old grandmother of soon to be 36 grandchildren with a purple Mohawk...I did not see this in my future even just a year ago!  Hey - my stake president even gave me a referral to go get tattooed eye brows!  You can't always see what tomorrow will bring!

As our appointment went forth somehow the spelling of the chemical name of yondelis came up.  Yondelis is the brand name for trabectedin.  I've learned a bit about leiomyosarcoma and the various drugs used to try to combat this dread disease.  However, frequently I get lost between the brand names and the chemical names of the drugs, let alone the various mechanisms by which they work.  During the course of this conversation Dr. Thompson acknowledged that he found the name "yondelis" a little unusual...like it ought to be the name for a birth control pill or something.  To which I added it could be something like "ecstasy" ... The room erupted with laughter, great tummy rolls of laughter.  As the laughter rolled on and on Dr. Thompson noted that there was a Yondelis who is a red-headed white girl who's a back-up singer for the Shirelles, to which Rich quipped that nobody today would even know who the Shirelles were....and the room erupted again in to gales of laughter and giggles.  Truly joyful laughter.  It's so good for the soul.  In the end Dr. Thompson noted how much he needed that appointment today....I hope in some way we lightened his day as much as he did ours...and continues to do...he's truly an angel.

After my appointment we drove into knoxville so Rich could attend his rehab class.  I went into Walmart to get some birthday cards.  On my way back to pick up rich I noted that there was a new Culvers that had just opened.  We headed back to Sam's and then he surprised me by heading to Culvers.  The place was slammed!  But the food was great.  I texted Bekah and suggested she transfer here and come live with us🤗

Turning the Corner

Chemo, yondelis to be exact, has royally kicked my behind.  I was thinking that this would be an easy routine since the 24 hr drip really was easy...but by evening of Friday I was in misery.  Saturday was total misery...between the vomiting, the pain, and the nausea I was pretty certain I wasn't going to make it through to Sunday or even Monday.  However, as this afternoon has worn on, the nausea is largely gone, as is the pain, and even the vomiting.  I've slept so much that my back hurts.  I took a shower and that really did refresh.

Rich and I had a great opportunity to chat with Joey for his birthday, this evening.  I feel awful, knowing that I have yet to get to a post office to mail him anything.  I hope he's not let down...and my guess is that he understands...but I feel so discouraged and frustrated that I didn't get this taken care of before all this.  I will be trying harder next year.  Perhaps the thing that haunts me most is that I'm still here...you'd think I'd at least get him a card while I'm here...it's the least I can do!  What if I'm not here next year?....

Completions

Rich had an appointment with Dr. DiMeo this morning that went pretty...except that I, as "RESPONSIBLE ADULT", wasn't there. 😝. He's doing better than the last several weeks.  The antibiotics and steroids Dr. DiMeo had given him to take if he needed them while we were in Alaska kept things at bay but as he came to the end of the rounds he was getting worse again and so made a trek to see the nurse practioner who had prescribed a different round of antibiotics and steroids and steroid injection.  Rich had also take in a sputum to culture and Dr. DiMeo said that the change in antibiotics was what he had needed but wanted to add another antibiotic as well, and some more prednisone too.  Evidently he had asked where I was and Rich had told him I was in the hospital receiving the yondelis and that prompted a discussion about the potential return to gem/tax.  Rich said that if we ever go back there he'd be happy to do the lung care for me...that is what I'd want too.

I was finally released about 4ish and we went to Knoxville to finish up some phone stuff and then headed back to Oak Ridge for pharmacy pickups.  We got home and watch a movie and I think I'm ready to hit the sack.  I didn't sleep well last night...just my usual reaction to all the steroids they pre board me with...tonight I'll probably crash.  Rich isn't feeling too good about my church attendance for this week...or for any outside activity due to the chemo...but I'm suppose to speak in sacrament meeting...so now what?  Guess I'll figure that out tomorrow.

Yondelis - Round One

Today we headed in to Dr. Thompson's office for my appointment, which was early.  I just love and appreciate Dr. Thompson so much.  He said if I wanted to wait and not do this he would back me to the hilt.  However, the pros for going ahead are the facts that I'm in good health and have the ability to weather the effects of the chemo right now is better than as the disease progresses.  And, systemic chemo is more effective on smaller tumors (usually) so capitalizing from when the tumors have shrunk from the gem/tax is a smart idea.  It was never really in doubt anyway...I felt that this was what we should do at the scans prior to my last...actually felt that we have the Lord in the mix.  So...it's on board.

Dr. Thompson's team called the hospital pharmacy to see if they had the chemo and they were informed that it was on a FedEx truck and should be delivered before noon.  So dr. Thompson recommended that we go get breakfast and then head to the hospital.  Which we did.  We got here about 11ish and by the time I got checked in, got to my room, had vitals done, port accessed, and pre boarding of anti-nausea meds and steroids, it was 3:30ish before the yondelis was actually flowing.  Looks like my 24 hour infusion will use up two days instead of one...that would be the advantage of home infusion...but hey...I played phase 10 with Rich and watched tv along with a little reading...not such a bad deal really.

So far, so good...except my blood pressure has been spiking.  Yay blood pressure meds.  My understanding is that the side effects really won't be too evident for a day or two either.  Dr. Thompson has me returning next Thursday for blood work too.

In the meantime we have enjoyed the love, support, texts, and calls of family and friends.  How did we get to be so blessed???

Labor Day

Today was quiet...really quiet.  Rich and I lazed about most of the morning just talking.  I think this is one of the most wonderful things that I have loved throughout our marriage...the pillow talk...the quiet, intimate chats about everything and nothing, that bring remembrance, laughter, the deep personal sharing of joys, fears, worries, and sacred trusts that forge and weld an impenetrable link between us...forever.  We've always had these times but with a quiet house now...these times are more frequent and somehow even more sacred...perhaps it is just that we're getting older and that is the natural course of things...who knows???  But I cherish them, whatever the reason.

Saturday evening I was asked to speak in Sacrament Meeting this coming Sunday.  My assigned topic is wide as the all outdoors - testimony.  I taught Sunday in Relief Society about the Book of Mormon.  In some ways it feels like it's the same topic.  I'm struggling to narrow the subject, since I need to speak only 15 minutes, but haven't found a way yet.  Mostly I've been reading and enjoying conference talks, but I know that's going to get me into trouble soon because my head will be swirling with ideas and I'll have no ability to pare down.  However, I knew when I was given this assignment that what I wanted most was to be able to provide a testimony to all I love.  Sadly I can't do that for anyone but myself, but I so want each one of my loved ones to want to know for themselves and pray that they'll do the necessary work to obtain their own testimony.  The old saying, "you can lead a horse to water, but you can't make them drink" is so apt.  I really would make a good satan...agency is so filled with worry and angst when you know the truth and you know that you MUST let others learn for themselves.

Thursday is coming rapidly.  I thought I was prepared...but I'm not.  I guess I was hoping that I'd just march off into the sunset and I wouldn't need to do this again...that somehow it'd all be over...but then there's reality.  I need to remember that the doxorubicin wasn't all that bad...but in my mind I guess I think that it wasn't all that bad because it didn't work, and the gem/tax was that bad because it did.  Convoluted...I know.  The degree of symptoms has nothing to do with efficacy...I know.  I'm grateful for the fasting and prayers and the priesthood blessings I've had, and amazingly, I really do feel hopeful...deep...deep...deep down inside.  But I remember the nausea, the deathly fatigue, the mouth sores, the legs that would not work, the coughing and pneumanitis, no strength or stamina, the feelings of helplessness and lack of energy.  It's reminiscent of pregnancy and delivery...I wanted the baby...but could there just be an easier way???  Obviously not.  So...Thursday will come and I will go to the oncologist and then to the hospital...could the food at least be better than it was last time???