Paul had his 3rd chemo treatment and the side effects are getting weirder and weirder. Neuropathy is a new one of course. That’s cold sensitivity in the extremities. Pain and tingling in his hands when he reaches into the freezer. Taking things out for dinner is no longer an option without using a cloth to pick it up. No more ice in drinks since it causes a sensation like his throat is closing up. Never a moment without socks and slippers on our tile floors. At the moment it only lasts about a week. That may change since chemo has a cumulative effect so we expect it will eventually last from treatment to treatment. There is a chance this could become permanent….a big fear for Paul, especially since he is a musician. Tingling fingers do not make for easy flute or saxophone playing.
A new one this week is cramping in his hands. It doesn’t hurt apparently but his hands will start to curl up on themselves. It happened while one of the chemo drugs were being administered and happened once more when he got home. All normal side effects according to his nurses. Just another interesting adventure in chemotherapy….
You wonder where it’s going to end. I spent some time last night searching Ampullary Cancer and found some sites with some survivor stories. It was good to hear some people in their 60’s and 70’s (since that is the median age for this type of cancer) speak of having their Whipple Procedure and chemo/radiation 3 years, 5 years, 7 years ago and how well they are doing. Sadly there are more stories of loss and suffering….being told you have 6-8 mos. to live…..burying your father 6 mos after his “life saving” surgery….
Even the long-term survivors spoke of the long and slow recovery. Taking a year to regain 10 lbs. another year to get to 15 lbs. back. Paul’s weight loss is difficult for me to see. My once robust strong husband is a shadow of his former self. But his eyes are bright and his life force is strong……and of course, I wonder how long he can hold on to that.
I KNOW he will hold on to that until the bitter end….there is no doubt….but sometimes that “will to live” just isn’t enough. If it was, a lot more people would have defeated cancer…especially pancreatic cancer….and Ampullary is so rare they treat it and lump it in with Pancreatic. So I browsed through support sites among pictures of Steve Jobs and Patrick Swayze….knowing those guys didn’t give up either but…..they still lost….
I’m sure I will have a change of heart when I hear the doctor tells us Paul is responding to the chemotherapy. I know that is the catalyst for all of these thoughts…negative thinking?….I don’t know if I would call it that….but I am even more consumed than usual with Paul’s health. Getting the PET scan results next week is all I can think about. Like a marble tumbling around in my head…cancer still growing? looks like it’s improving? “I’m sorry Mr. Klemm there is nothing else we can do.”? Like a head full of Bingo balls each with a different result. So until next week those balls will keep tumbling around, keeping me up at night…keeping me occupied…..
More tears today….came out of the blue to be honest. Paul and I were talking about the physical effects his treatment has been having on his body and he says, “not to mention the psychological aspects. I’ll confess, I’m a little worried about Friday” ….Friday? What’s Friday?……his first PET scan. This is where we find out if the new treatment is working.
Paul and I were both surprised when he didn’t have regular scans with his first treatment but his doctor insisted it was ok not to. I’m sure they take everything like his age, health into consideration when making these decisions…..but it did seem strange not to get regular updates on how this was going. Sadly it took a medical complication like a bowel obstruction to show us it wasn’t working.
Anyway, this” before church conversation” of course set the wheels in motion…..almost like pre test jitters……is all this working? Are they even going to really be able to tell from this scan? and of course the one question that weighs the heaviest….what if it isn’t working?
That question alone is enough to send me spinning out of control into this incredibly vivid scene of life without my husband. The awfulness of it is unbearable. And let’s face facts…..it’s a distinct possibility. Looking at him, standing at the podium at church reading the opening prayer with the congregation…..I am overcome with emotion. Eyes keep welling up and spilling over. It got embarrassing after a while since I sit in front of our entire church in the choir loft. My friend’s hand me tissues but I just can’t seem to get myself under control. Wave after wave of grief, fear, uncertainty…….sigh…..it was a rough service. But I made it through, gathering myself together when Paul went up to sing a jazzy little number about Jesus being the rock in the storm……
But even after a nice lunch with Paul and Daniel and my traditional retreat to the bedroom for my Sunday nap….I still can’t shake it. A little more crying then finally…sleep…..where I wake up with a little more perspective on things. I look around my home, noticeably empty after a successful pre-moving yard sale, and there is no time for tears. There is much to do and time is running short to do them. Packing, organizing children before they leave for summer adventures, more packing, more selling of unnecessary things, home hunting and of course, cancer fighting……always fighting……
Graduation is upon us…..I can’t even believe how fast this school year has gone. I suppose it’s a blessing in some sense. This last year and a half has been torture a lot of the time. Our oldest will be entering her Senior year this coming fall. Our youngest will be a Freshman. I knew this day would come, when they would be in the same school for one year and here it is….I am excited for all the fun we will have together as a family….football games to see Daniel in the marching band….going to see Rachel in the school theatre program…..It will be a year full of “Firsts” and “Lasts”….
Sometimes things in our house seem so normal. Like cancer isn’t even a part of our lives…..I don’t know how anyone else feels about it but to me, cancer is always in the room. It’s like that 800 lb. gorilla. Wether we are enjoying a meal as a family, we are out enjoying laughs and karaoke with our friends or I am busy at work….that gorilla is always there….sitting quietly in the corner most of the time….but I can always see him out of the corner of my eye. That’s really the only way I know how to describe it and I may not consciously be thinking about Paul or this disease, although I do a LOT, but even when I am not I still FEEL its presence. I have never felt anything like it before nor do I suspect I ever will.
UGH…yard sales…..love to shop them….hate to have them…..and we are preparing for one today. A necessary evil when it’s moving time. And yes, moving is creeping up on us. We have been casually looking for a new home these past couple of weeks. Not too seriously since we want to stay here as long as we can. Since we met with our lawyer and surrendered the house we don’t have to pay towards the mortgage at the moment. So we are essentially living rent free until the foreclosure is complete. That will take a couple of months so we are saving while we can. We also readjusted our housing “wants”. We were looking for a home in the $1200-$1500/month range and hoping to get a 4 bedroom or a 3 bed with a den so Paul could continue to have his home office and so we could have a spare bedroom in the event I need my mom to come down here and stay….yes, you can read between the lines……but my biggest fear is Paul’s condition will worsen to the point where he can’t work and I want to be able to afford the house on my income alone so we are now shopping in the $1000-$1200 range. That doesn’t leave a whole lot in Portland but I have faith the right thing will come along 🙂 Hopefully someone will know someone who can cut us a deal and get us in a place that will be just perfect for us 🙂
In the meantime, I have 2 teens to wrangle into getting things together and labeled for a yard sale I want to have next week. Even though yard sales are a pain in the butt, it is very liberating to let some of these things go….cleansing in a way….out with the old, in with the new. Daniel will be FINALLY getting a new bed….this poor kid (at 6’3″ 200+ lbs) has been sleeping on his disassembled bunk beds for years because we couldn’t afford a new bed…..never a complaint of course…..but he will be happy to see those bunk beds go and a real bed come in 🙂 Rachel is letting go of some of her youth, in the form of bags of stuffed animals 🙂 Time for the babies to grow up a little 🙂
So wish us luck, say a little prayer and I hope there are a few margaritas waiting for me at the end of this work day!
We were able to get our son Daniel a Nook for his 14th birthday. He is an avid reader, so much so we have caught him reading under the bed covers on several occasions. How do you punish a kid for that??!!?? Paul was a voracious reader as a youth so it’s nice to see them share that love of reading together ❤ The kids have really made a lot of sacrifices over the years and very rarely complained about it. I was so happy we were able to get them each one special gift.
A few things since my last post. Paul gave some thought and decided it was time to ask the doctor for a handicap tag for the cars. He had an appointment at a hospital and had to park 2 blocks away and it about killed him, especially lugging his briefcase and information packets. He spoke to his oncologist and of course, he was happy to write him the prescription to get them. Paul told him he wanted a temporary one but he wrote the prescription for a permanent one………..
……we discussed it the next day and we both confessed to thinking “does that mean something?”……..
but we decided he writes everyone a permanent one…..right?…yea….let’s just go with that.
And Paul bought himself a cane. It’s beautiful carved wood but I can’t help but think “Holy shit! My 45 year old healthy husband needs a CANE?” ….and sadly, the answer is yes…..my husband isn’t healthy….and he needs a cane…..but I keep praying and hoping that a day will come when this is all a distant bad memory. We just keep looking down that road….easily another year long…..to the light at the end of the tunnel. When we will look back and say “wow! That was really hard but we made it!”
Reality returned to the Klemm house today….after a wonderful weekend of pedicures, tanning in the swimming pool, bbq, karaoke with friends and LOT of margaritas…..round 2 of chemo is here. Paul tolerated it well but we both know this isn’t going to be the walk in the park his first treatment was. This cocktail of chemo drugs comes with a lot more side effects than his first treatment (totaling 1 month chemo, 28 radiation treatments + chemo pump, then an additional 6 months of chemo). That treatment simply didn’t work so now he is getting the heavy-duty one. 4 different chemo drugs plus anti-side effect drugs plus drugs to make the other drugs work better!!….it’s insanity to tell you the truth…..and he is looking at 6 months of this…..plus 3 major surgeries the last year…..it’s crazy when you think about it……what its going to take to kill this disease….it’s a horror….
But I feel like we are as ready as we are going to be for this….we are both enjoying gainful new employment. Paul has great flexibility but alas, no steady income with a straight commission job…..but he loves it….and he’s helping people better themselves by obtaining higher education….and his feeling good about the work he is doing is much more important to us than the money. The money will come….it always has…..He provides.
We are surrounded by family and friends and really feel the wagons circled around us. I can’t imagine how horrible it must be for someone to go through something like this without the support network that we are so blessed to have. I really feel that God has guided us to be right here, right now, as we are about to face the biggest fight of our lives. It isn’t perfect in my opinion because my mother is still in Cincinnati desperate to get moved down here but she just hasn’t been able to sell her condo so her moving plans are on hold. But I just have to trust that to Him….but I do miss her so.
He spent the day at the cancer center today. Almost 8 hours…..9 bags of poison pumped into him….and now he has the 24 hour/day infusion. The pump makes this strange little “mewing” sound….every minute or so you will hear it…..just one of those funny little things you have while your husband is fighting the good fight….nothing really prepares you for this…..I watched my mother lose my step father in an eerily similar scenario….but it STILL doesn’t prepare you because you just can’t really fathom it unless it happens…..
I hear so many people say that Paul is inspiring…that exact word….inspiring. And you don’t really set out to be inspiring….we have actually talked about it because SO many people have said it….you are just plugging away and dealing with it the only way you know how….and you make that choice….the clock is really ticking and you better enjoy every second…..and fight like hell…..he just doesn’t know any other way to be…..he just is…..inspiring ❤
Paul and friends at “The Wedding Singer” 5/4/12