Quick update

Just a quick update for the record.  After having a couple of “4” days last week—and feeling wonderful about seeing some progress—I did the “one-step back” portion of this journey!  I spent about 3 days barely hanging on to a “3”.  It was a good reminder of a couple of things—don’t take progress for granted, and pace myself better on those good days.

Yesterday and today I’ve been back to “4”.  Yesterday I did a number of errands, had a visit from my niece Sally, and even went to a movie last night.  So today is a “lay-low” day even though I am feeling pretty good.

Other side effects:  my tongue is burning less (Yippee!!!), which makes eating a little easier; the cold sensation is getting better—I can handle colder things with my hands, and my throat isn’t reacting to the cold as much; I made it for 14 minutes of exercise yesterday; and I’ve gained about 1.5 pounds!!  The tingling in my fingers and toes continues, but may be lessening a bit—hard to tell for sure.  My eyes still water a lot and my nose runs a lot also.   My brain is still foggy!  I missed my brother’s birthday this week, thinking it was today instead of last Sunday!  That is pretty unusual for me—but indicative of the details that have escaped from my brain.  Sure hope they come back!!

This is more detail than most want to know—but I want to know it.  I’ve had several people tell me that they don’t remember much about their weeks/months of chemo…and most wish they had kept a better record of what they experienced.  (Some just want to forget, and that’s fine/understandable also.)

One more thing I must record:  During one very low period in the past few months, I made a promise to myself that after I was done with chemo, I was going to give myself the gift of a spa day—purely pampering myself with as much as I could afford.   My “day” turned into only a couple of hours, (“as much as I could afford!”) but it was wonderful.  I chose to go to The Spa on the Marsh (www.spaatthemarsh.com)  in Minnetonka.  It’s a place I’ve seen advertised and have read about for years.  It’s pure luxury, which is reflected in the prices of course.  I had a full body treatment, including exfoliation of all the dead skin on my body, steam bath, seaweed wrap, mini-facial, and final oil treatment on all my skin.  Heavenly!!  I recommend it to all of you!  Be good to yourself—including a luxurious treat now and then!   (And I’m not talking about frosted doughnuts!!)

All for now.  Seems the “drama” level has dropped significantly in the last couple of reports—I don’t mind!!  I’ll go to the Guthrie if I want more drama in my life!

Progress!!!

Yesterday was the first day I could say I can see some progress…and it feels super wonderful!! Up until then, I could hardly make it to a “3” on the Tonneson Energy scale, but yesterday was legitimately a “4” and today is also!! From what I’ve read and heard personally, the recovery is not a nice straight line upward out of the depths. Rather it’s a “2-steps forward, 1-step back” sort of journey. That’s okay, though…as long as I can do 2 steps forward, I’m very thankful!
More specifically: I have an increase in energy…enough so that I went to my exercise center for the 1st time since December 16th. But here’s how weak I am—I lasted for 4½ minutes on the treadmill before my legs were too wobbly to go any further…and that was at a paltry 2.3 mph! But, it sets a baseline, and I’ll keep going up from there. Then I did 5 minutes on the “arm bike”, after which I came home and rested on the couch for an hour or so. It just felt so good to be going there again, and beginning the work of strengthening my body.
I’m actually beginning to experience a few signs of other things lessening their grip on me: my tongue has periods of time (yesterday and today) when it isn’t burning as much; I’m able to briefly handle cold things without having gloves on; my fingers are ‘feeling’ more—like when I type I can actually feel the keys; my toes may even be tingling/burning less—not totally sure about that, but I’m hopeful. And here’s one that just occurred to me today—I’m beginning to eat at the counter in our kitchen again. For most of the last 5 months, I’ve avoided even going into the kitchen because I hated the sight, smell, and taste of food. So Jim would prepare ‘whatever’, and bring it to me on the couch. (Ya think I’m a little spoiled by now??) But yesterday and today I’ve prepared my own meals (usually heating up something from the fridge or freezer) and I ate in a more normal place to eat! Gotta say–each little change is a time for joy!
One somewhat unrelated sidebar: Jim & I went to hear Eben Alexander speak last night at a large church in Plymouth. He’s the author of Proof of Heaven, which has topped the NYTimes chart for over a year or more. He’s a neurosurgeon who was in a coma for 7 days, given a 2% chance of living. While in the coma he experienced “heaven”, and came back to tell the world about it—particularly the world of science and medicine. Pretty darn interesting, and his talk was very powerful. It’s one thing to read about an experience like this, but it’s entirely different to have the “real person” in front of you talking about it. Anyway—I’d recommend the book; and a second, follow-up book is coming out this week.

So—with joy and gratitude I’m sending out this progress report. I know that I made the right decision by not doing the final treatment, and I thank all of you for keeping me in your thoughts and prayers while I was going through that very difficult decision making process!! The strength I received through your prayers once again carried me to the right place! I can’t help but love you all!

Done!!

That’s right–I’m done with treatments.  I know I should be whooping and hollering, and  joyfully jumping up and down…but I’m not quite there yet.  There is still a lot to process about this decision.

My oncologist spent a long time with us today, going over options, risks, benefits, etc. etc.  It was clear that he felt this was entirely my decision in terms of what to do today and from here on.  There are no right/wrong answers.  There are risks/benefits to any choice, and we talked those over quite a bit.

Allow me to elaborate:  The studies that have been done for this type of treatment (officially: FOLFOX) have been done on 12 treatments, which has been claimed to be” optimal”.  No one has done a study on 11 treatments…and especially not on 11 treatments where 3 in the middle were lower dose.  So no one can say if stopping now is going to hurt me in the long run.  Risk/benefit-get it?  Maybe ( or maybe not) I’ve had enough to have disposed of every last cancer cell in my body…but there is no way to know that for certain.

There was no point in doing a lower dose. (which is interesting…my doc in AZ was ready to go that route if I were to stay with him.)  My doc here says that a last dose at a lower rate has no added benefits.  So he basically said my decision was one of two:  go the full route or stop.

The decision ended up to be very emotional.  How was I to know if I was putting myself at risk by stopping now?  I am fairly certain I would be putting myself at risk by doing a full treatment.

I chose to stop, and I feel it was wisdom beyond my own that brought me to that decision.  I have continually prayed for wisdom, and I know (from emails, texts, blog comments) that many others were praying for the same thing.  Having that support has sustained me throughout this journey, and was an important part of feeling peace with the decision I made.

Now what?  Interestingly enough, nothing was said about what to expect in terms of healing.  When can I expect my appetite to return?  My tingling fingers and toes to stopping tingling? My tongue to stop burning?  My sensitivity to cold to go away?  My skin to stop peeling on my hands and feet?  I didn’t ask these questions…there was simply too many other things that were talked about.  In terms of these issues, I’m going to be working with a naturopathic doctor whom I’ve been in contact with throughout treatment.  She has worked with cancer “after-care”, and has some plans already figured out for me.  I’m glad I have her!

In medical terms, what’s next comes is in August:  CT scan, colonoscopy, blood work, and doctor’s visit.  Until then, I’m set free…for 4 months when the same thing will occur again (maybe not the colonoscopy…one can hope!)

Unbeknownst to me, all three of our kids planned to come to the clinic to be with me on this last treatment.  Thanks to the quickness of texting, Jim was able to let them know I wasn’t having the treatment, so instead they picked up lunch and came to our house for lunch.  Have I mentioned I have the greatest “kids” in the world?  What a day brightener they were today, and what a blessing they have been throughout the entire past year with both Jim’s and my health issues.

Below is not necessarily the best picture of the 4 of us, but was taken before they left to go back to work.  They brought flowers, and Mark brought a teddy bear.  If you can’t see what it says: “Colon cancer messed with the wrong chick!!”

 

I think that’s it for now.  I’m exhausted from all  the emotional energy that went in to the morning.  I will write more as time goes on.  I want to keep a record of my recovery, so you can bet I’ll be writing about that as well.

But…I have to say how  incredibly thankful I am for those of you “out there” who have been with me throughout this journey so far.  This feels like a bend in the road, and a new road is unfolding in front of me.  Truly, only God knows where this road will lead me!  itzaGodthing!!

Ready for #12? Not so sure!!

OK—day before Treatment #12—time to write a record of what has happened with #11.  It’s not been a pretty picture, but it’s part of the record.

Today is the first day I could even honestly put a “3” on my daily tracking of energy, etc.  All the rest of the days were “1’s” and “2’s”, with many ending below zero.  This has definitely been a much harder treatment than any other.   I’ve lost more weight, even while trying my hardest to eat as much as I can.

But here’s the problem in the eating arena (I may have written this before):  My mouth tastes and feels like a mixture of metal, putty, and cotton. (Yum!!)  My tongue burns continuously—like I just ate boiling soup.  My lips are numb and tingly.  Now—what about that would make you want to put something into that mixture of misery?  Not only do I not want to eat, I often pay a price when I do—stomach acid, gas explosions, diarrhea,  AND, to add insult to injury, my mouth gets worse than it was before eating.  This has gone on at a lesser scale all along, but this week was the worst.  (I’m preparing all of this info, and more, for my oncologist visit tomorrow!)

One of the new things that hit me this time was a depletion of my emotional and mental energy.  For the most part, over the past 5 months, I’ve been able to keep positive thoughts foremost in my mind—often having to mentally and purposefully turn around negative thoughts that kept popping up.  I’ve also been able to keep a sense of humor, trying to insert a little into each day, and even into the posts that I write.  But each day I could see that part of me diminishing…fading into dust.  And of course, that is like a self-fulfilling downward spiral…I feel bad about feeling bad, which make me feel badder!! (not a legit word, I know…but a descriptive one nonetheless!) *Note to my psychologist and social worker friends:  I’ve upped my depression meds.  I know you’d want to know that!

The other thing I have developed during this two weeks is a fear of this last treatment.  It may be completely unfounded, but it’s there.  During the times when I was feeling my worst, I truly wondered how much a body can take before it says “That’s it.  I’m outta here!!”  I’ve never felt so depleted for so long a time.  In other words, the Mack truck just kept circling the block and whamming into me over and over.

As you know, if you’ve been following me for awhile, I had a friend die of chemo a couple months ago. That is profoundly scary….and sad!!  Since then I’ve heard 2 other stories of people (friends of friends) who have died from chemo…not from cancer, from chemo.  Right now I cannot imagine taking another full dose tomorrow, which would mean an even tougher 2 weeks following.  How far can one go down before you can’t recover?  I know that’s a very depressing thought, but it’s there in my head, so as you know…if it’s in my head, it will likely land ‘on paper’ as well.

Well, this is all prep for my visit tomorrow.  I’ve thought of several options other than full dose, and I’m hoping my doc will consider one.  If not, I’m not sure either of us will allow a full dose—after all, it is my decision.  Jim is as scared as I am, and we just don’t know if we can do this one more time.  We’ll see—I’ll report.

Just so this isn’t all gloom and doom (sorry!!), I fit in a few fun things this week—Book Club, lunch with 4 of my sibs/spouses, a couple of church services, and Easter dinner at Scott & Jen’s.  I guess that’s not bad for a down week!

More later…thanks for prayers!!!

Another Mack Attack!!

I think I can honestly say I’ve only had 3 Mack Truck attacks during my 22 (so far) weeks of treatment. They’ve all acted alike—they must have a union contract that gives them specific instructions of how to roll over someone with cancer!!

At any rate…as before, I didn’t see this one coming. On Thursday I went to the clinic to have my pump removed. While getting out of my chair in the waiting room, headed to the chemo room, I was way off balance and likely would have fallen if Jim hadn’t grabbed me.

What was that?? I had been having a fairly decent “3”-type day. Then—wham—knocked off my feet. The nurses were quite concerned (I have THE best nurses ever!!), but trusted that I knew what I was talking about when I said I just needed to go home and rest/sleep. Besides, I was scheduled to come in the next day for hydration and a shot, so they could double-check on me then.

So, aided by Jim, I made it home and to the davenport—where I remained for about 18 hours, with a couple trips to the bathroom during that time. I graded myself at a point I hadn’t used before: minus two!! I slept and slept and slept. Good therapy, I guess.

The two days since have been slightly better, but still today I had to choose to miss a piano recital for Noah. But, he’s coming over here later to play his piece for me!

In the midst of this—the good news: here I am with only one treatment to go!!  Yay!!  My “Turnaround Day”, May 1, is 20 days from today. I’m going to make this, folks!! I can lay around for awhile yet, even though I want to get outside and clean off my flower beds! It’ll wait…I’ll get there, and I will thrill in the dirt getting under my fingernails even more than ever! I plan to plant more flowers-probably in pots—then I have before.  I’m going to brighten up my world!!!

I am going to CELEBRATE—coming out of some very dark times (going back over a year to Jim’s diagnosis that led to his open heart surgery) and moving into the light. Very appropriate that this should be happening the week of Easter!!

Hopefully the last Mack Truck has come and gone.

I truly look forward to next week when we learn again of the tremendous love and sacrifice made by Jesus…and to the glorious message of Easter Sunday morning!!

 

Treatment #11: Full Force Ahead!!

That’s right…orders are: continue with full dosage. Not really a surprise…she used exactly the reasoning I thought she would: I’ve already had 3 lower doses, so I need full doses to make up for that. And, of course, since I only have 2 treatments left…let’s go for the gold (or something like that!!) I can put up with anything when I know the end is in sight!!

So, I just got home, and have my lovely, elegant, and fashion-statement pump hanging around my neck until Thurs. My fingers are not working well (so this will be short), and my throat is constricting. Other than that, the other side effects are waiting their turn to show up. I’m hoping to be able to go to my old support group tonight from 6-8. I missed a couple of sessions in October (remember Cancun? I hardly do!), so this is a makeup from that time. It’s almost 4:00 now so I’ll see how I feel in a couple of hours.

The other piece of news from today is that I’ve lost 9 pounds since I left in January and was last weighed at this clinic. (I’m sure I had heavier clothes on then!) So I got a firm eyeball-to-eyeball lecture from my NP. “No more weight loss!!” Of course, a dozen of my friends would have told me that, as well…and I’m not disagreeing!! So the plan is for me to eat “something” (she’s not fussy what) every two hours. Even at night she wants me to keep crackers by my bedside so that I’ll eat something during the night. What a drill sergeant!!

Lucky for us, we have a couple of very kind neighbors who are bringing meals over this week! Love it!! Then starting next week we will get Meals on Wheels delivered again for the remainder of April, like we did in January. That will take a lot of pressure off Jim…and me too, for that matter.

As for my countdown…today is Day #24 in my race to May Day/Turnaround Day. I’m not going to change that based on any of the decisions that were made today. I think it still gives me enough time to recover from my last treatment.

Lastly—please do not feel sorry for me. If you want something specific to pray for: I need strength and courage to go through the next 4 weeks. By past experience, and factoring in cumulative effects, I can expect 12-15 of those days to be in the 1-2 range on the Tonneson/Richter scale. (“1” is really miserable; “2” is fairly miserable!) Hopefully I can also hope for 4-5 “good days”: 4-5 on the T/R scale…however, I never got to a 4 this past treatment time, so maybe that’s hoping for too much. We’ll see. So—that leaves my “3” days, which I describe as tolerable—able to do 1-2 things (lunch, grocery shopping, etc.) and that’s my limit. (Those are looking more like “good days” about now!” ) Maybe I can count on 4-8 of those kinds of days. Does that add up to around 24? You figure it out…my chemo brain protesteth such hard work!

If I don’t write for several days, it’s likely that my energy is really low. I do find, however, that sometimes writing a post is energizing. We’ll see what I’m inspired to do!

By the way—several people have said something about visiting me once I’m done. You don’t necessarily have to wait. If you’re close by, or “in the area” for the day—check with me. Visitors bring energy, and I’m always quite honest about when “time’s up”!

Thanks again for all the support! I’m heading ‘home’—out of the darkness!!  I’m going to make it!! Hallelujah!!

Treatment 10, Day 10

It’s time to write another post…mainly “for the record”. I’m finding that “the record” is changing and I need to keep track of those changes.

But first, a little info about the last week.. We are back in Minnesota. People say we came back too early, but I’m not going to complain about a few days of snow…as long as it’s only a few days!! I’m glad to be back. We went to church last night for Lenten services, and it was soooo good to see friends there again. The people of Gloria Dei have been such a caring, loving, praying community for us!

The last week in Arizona was such a good one. One of the things we consider a true blessing in our lives is the two couples with whom we have had a 44 year friendship. In 1970 when Jim graduated from seminary and took his first parish in McVille, ND , we met Ron and Cindy Ophaug. They had just graduated from college and had moved home to begin farming on the “home farm”. Both were from that community. Then a year later, Darrell and Kay Moon moved to McVille when Darrell took a job at the bank. We were all close to the same age, and all had just started families. Our oldest children, Kristen, Tessa, and Mark were all born within 7 months of each other. We quickly became friends, and remained so ever since. Additional children also arrived, timed similarly!

Last week all six of us were together for a couple of days. We celebrated Jim’s 70^th birthday together. (The others would want me to point out that Jim is the oldest in the group!!) We had some great talks together—and just simply enjoyed each others’ company, often remarking about all the things we’ve gone through…and “how did we ever get to be this old??” All in all, it made for a wonderful final week in the warmth of AZ!

But…I digress. (Our 6-year-old grandson, Noah, said that phrase in a Facetime phone conversation with us last week. Cracked us up!)

I’m on Treatment 10, Day 10. I keep expecting to get a little stronger each day, but no such luck. Usually by Day 9 and 10, I can record some 4’s, 5’s, and 6’s, in my scale of how I’m feeling. But yesterday was a 2 and today a 2.5. So…I’m thinking the cumulative effects are piling up. Interestingly, when I saw my AZ oncologist the day before we came home, he said he would be cutting my dosage for the next 2 treatments if I were to remain in AZ.  But…he’s no longer in charge of treatment decisions. He sent that recommendation to my doc here, so we’ll see what happens to that. I would not protest to having a lower dosage for the last 2 times!

“For the record”, here is what is going on:

1. Fatigue/Weakness—my biggest and most difficult side effect. It is definitely hanging on longer and heavier this treatment period. That’s one of the things my AZ doc was concerned about. I usually bounce back and have a few good days before the next onslaught of drugs. If it happens over the next 4 days, I will be very happy!

And…now on to body parts (isn’t this exciting??!!).

1. Fingers: It didn’t take me long to be very glad we were in AZ for 2 ½ months! As soon as the MN air hit my fingers, I could tell a big difference in the tingling and pain. I had had cold sensitivity in AZ that I mainly experienced when I tried to hold something cold. Last week I dropped a bottle of ketchup when I tried to remove it from the fridge. That was a first. Now I am using gloves to handle anything cold. Hard to know how much of that change is because of the colder weather, and how much I could blame it on ‘cumulative effects’. It’s definitely one of things that I want to avoid long term. Hope it’s not too late!
2. Feet: I can honestly say that there hasn’t been a big change for the worse here. They still tingle and burn every day/night, but I know it could be a lot worse…and, of course, hope it doesn’t change for the worse.
3. Tongue, lips, and mouth: My lips tingle much of the time…more of a nuisance than anything, but it makes it more difficult to eat and drink comfortably. As for my tongue, it never stops burning. It feels like I have continually just ate some soup that came straight from a boiling pot. It is definitely prohibitive in the desire for food!  My mouth is a constant deterrent to eating!!  Both the taste and feel inside of my mouth is disgusting!  Some people describe the taste as metallic.  I  would add ‘cottony’ to that.  Doesn’t that sound appetizing–a combo of metal and cotton?!  Yuk.  That leads to…
4. Weight:  not the best.  Hard as I try to eat as much as I can, I have lost about 15-20 pounds in this whole process.  Even when my sister Mona was daily cooking good meals, I lost a little.  Today I am officially (on our home digital scale) 100 pounds.  I really don’t want to fall below 100, but my track record isn’t all that good!  There are only a few things that I actually look forward to eating:  grapefruit, strawberries, raspberries…(not high-caloric foods!) and sometimes pizza.  Other things fall in between ‘tasting good when they’re put in front of me”, and “I simply cannot eat that without gagging”.  I’m hoping my appetite will quickly return…and I’m hopeful about that because the 5-6 weeks when my dosage was decreased, I actually had an appetite for part of that time.
5. Eyes and nose: they both run! My eyes water throughout the day…sometimes a lot, sometimes not much. Makes me look like I’m crying a lot! Mainly a nuisance. But…my vision is also getting more blurry. I continue to read every day, but I can tell quite a difference in my vision. That should return to normal following the end of treatment. My nose will suddenly start dripping without warning…again a nuisance side effect. But every morning I need to ‘clean out’ my nose, which involves bloody stuff that has formed overnight.
6. Rash—a new development. I have a rash on the underside of my upper arms…you know, the place that wiggles uncontrollably when you move your arms. (except for those women who are young, fit and trim!) This is one of the listed side effects, but not one I had experienced before. Something to discuss at my next appointment.
7. Last, but certainly not least—my brain! Uff—I miss my old brain!! As with anyone who is my age, we start to lose the ability to come up with names or other facts that used to be easy to recall. Well….let’s multiply that by…??? I’m actually not sure what number to put there, but it is definitely exponentially worse!  I’ve begun to not even try to recall certain things because it takes too much energy! I’m not sure how long following treatment I can hope to have my old brain back, but I hope it’s not too long!! I sure do miss it!

I have actually begun a “countdown”. As I said to a friend at church last night: “The close I get to the last treatment, and the brighter the light gets at the end of the tunnel, the more I want to speed up the train so I can get to that tunnel’s end faster!” So I thought it might help me if I started a countdown to the day that I anticipate to be the true beginning of the end. I’ve chosen May 1 as my ‘turnaround day”. That is Day 9 after my last treatment. Judging from my current experience, I may be too optimistic with that day…but I’m also hoping my last 2 treatments may be lessened some in their dosage. Anyway…today is #29, tomorrow-28, etc. (Trust me—it’s on a spreadsheet!)

Well…I’ll bet that’s more than anyone (other than me) wanted to know! However, beyond wanting to write it all down for my own records, I have had more than a few people tell me that it has been helpful to them to hear what I’m experiencing…because either they, or someone they care for, are going through a similar journey. So—with great detail, I continue to blabber about a journey that none of us wants to take…and hope no one close to us has to embark upon such a journey. But, facts are facts: 1 in 3 of us will be diagnosed with some type of cancer in our lifetime.  So—take good care of yourselves, my friends. (I actually could do a whole post or more on that subject alone! But not today.)

Thanks for being part of my journey! I say prayers of gratitude each day for you!!