Now that I’m past the first two full days of my Chemotherapy regimen, I’ve experienced and learned a great deal in those 48 hours, and so have decided to provide an update right now, rather than waiting until the end of this first full week. Particularly since the first two days are more complicated, including both Intravenous as well as Oral drug administration, at different times of the day. The remaining 5 days of each week will consist just of oral medications, taken in the evenings.
The quick result on those first two days is that I’m extremely pleased to have NOT experienced any immediate administration-related negative side effects – no nausea/vomiting, nor allergic reactions, nor cardiac abnormalities, nor diarrhea. So the portable “side effect pharmacy” package I’ve prepared and been carrying with me, containing anti-nausea prescription and Imodium (anti-diarrheal) and Benadryl (rashes and other reactions) and acetaminophen (Tylenol) hasn’t been needed yet. But best to continue to be prepared for awhile, wherever I go.
But nonetheless have had some other experiences in these first two days, and learned there are lot of nuances involved with regular Intravenous drug infusion and the mechanics thereof. So keep in mind that one of my secondary goals throughout this chemotherapy regimen is to continue to maintain my regular lifestyle and activities, as much as possible. So I want to be able to keep riding my bike(s) regularly, and taking the kayak out regularly, and golfing as much as possible. To that end, with severe anemia (lowered hemoglobin levels and breathlessness attendant upon significant exertion), that means several things …
- My paddling rate in the kayak is going to be lower than it was two or more years ago, when I did the 2016 annual Des Plaines river Canoe and Kayak marathon – 18.6 miles in 3 hours and 15 minutes – but hey my general local kayak excursions are more for simple exercise and sightseeing, so whatever pace I can manage comfortably is just fine. So maybe a 2 hour trip now only takes me 6 miles instead of 8 miles – it’s still two hours of comfortable aerobic full-body exercise. Everything I read says that continued fitness and conditioning is one of THE most important factors in achieving success through these treatments.
- On the golf course, I’m finding that walking up long uphill fairways is now just too arduous – have to stop and catch my breath several times, and that slows down the rate of play. So for the moment I’ll have to take a golf cart. Still get lots of exercise walking around setting up shots and around the greens and tees, so it’s still good exercise. And whenever we get to the point where my hemoglobin levels move back to higher levels, then I intend to resume walking again. We can do this.
- My pedaling speed on my 27” hybrid bike is going to be lower than it was two or more years ago. Well there, I still wanna commute to work and do other local travel by bicycle, whenever the weather conditions are suitable. Why not save on gas and get some exercise in concert with other such short trips – offsets the essentially sedentary nature of my daily office work. So such trips on my regular bike(s) would now take longer than they used to a couple of years back, before the anemia effects started to show. In past years, I could maintain a pedaling rate of 13-14 mph, but by last spring I found I was down to about 10-11 mph, making such trips significantly longer, and by late fall this had further dropped to 8-9 mph on the daily commute rides.
Well I have just the answer there – through “Crowd-funding” discoveries made last year, I have acquired two “E-Bikes” – bicycles which incorporate a small electric motor in the rear wheel hub, along with a high-capacity rechargeable lithium battery built right into the frame itself. Now these bikes have normal bicycle gearing, with a 7-speed cassette shifter, just like most other bikes. I got one such full-size 26” fixed frame E-Bike, equipped with fenders and saddle-bags and so on, which will be for to/from work and other local travel from home – Sears office (Hoffman Estates) is 8 miles south one way, Northshore Oncology (Crystal Lake) is 7 miles north, and Good Shepherd Hospital (Barrington) is 7 miles east. But with the big E-Bike – “Flash” is the name, www.flashbike.io, for those interested in more details – when engaging the “Pedal Assist” feature (with available assist levels from 1 to 4) – then I just pedal at whatever level of force I feel comfortably in applying, and then the pedal assist just adds to that. So on the level, at maximum pedal assist, I find that Flash can maintain about 22 mph. Wow !! So that’s significantly faster than I could run my old 27” hybrid back when I had better capacity than I do now. Really Wow !! And range-wise, I find I can ride Flash to work and back without an interim charge (16 miles) and still have about 1/3rd capacity remaining when I get home. So the effective full-charge range is about 25 miles. This is definitely the way to go, for somebody like me with severe anemia. The one way trip to work on Flash now takes me no more than 30 minutes, and by car during “rush hour”, it’s about 20-25 minutes. So I’m getting 30+30=60 minutes of aerobic exercise just about every day, and at a daily time cost of no more than 20 minutes over commuting by car. Plus now-regular side trips to Oncologist or Hospital, as added bonuses. Best investment I ever made.
And then for traveling – about 10 years back I got myself a really sweet little Dahon folding 20” bike, which when folded up neatly can be readily carried inside the rear of the Mazda 5, and also carried on buses and commuter trains, and in a suitable carry-case even as checked baggage on airlines. Has been really great for local movement around waterski tournament lake sites for several years. Also an absolutely great transit commuting bike – ride from home to train station, fold up bike and carry aboard commuter train, then at downtown station unfold again and ride to office or other downtown destination, then fold up again and take it inside and stick it under a desk or shelf. No huhu.
But that Dahon is all pedal power, which I’m not doing so well at these days. So enter “Mate” – www.mate.bike, for those interested in detail – which is a 20” folding E-Bike, also with 7 speed shifter for pedaling, and with 5 levels of electric pedal assist. Slightly less powerful motor than Flash, but a larger capacity battery, so I find the effective full-charge range for Mate is about 35 miles. Speed on the level with max pedal assist is about 17-18 mph. And on the uphill stints can still maintain about 12 mph, where I used to be doing only 5-6 mph on the un-assisted 24-speed hybrid in compound low gear, or on the folding Dahon. Sweet. My first downtown visit to Northwestern University Hospital 2 weeks back I did so with the Metra suburban commuter rail service here in the Chicago area, taking Mate along for the local home-to-station and downtown station to Northwestern legs of the trip. Total travel time that way was only slightly longer than by car during Rush Hour on the Expressways, and didn’t have to deal with the exorbitant downtown Chicago parking costs. And the city has developed controlled bike lanes on most of the major streets downtown in recent years, so I found there are lots of folks riding bikes in the downtown areas. Lots different from when I used to live in the city and work downtown 20+ years ago.
So much for my intended activity details. Now how does this new Intravenous Infusion regimen factor into my desired activity game-plan? That’s been a subject which has been bothering me ever since I learned that at least one of the drugs I’ll be taking will be administered by IV. Well let’s start with one aspect – the actual connections and schedule. As mentioned earlier, the Kyprolis IV infusion will be only two concurrent days each week, on Thursday and Friday. Now they could do each one with a completely separate IV “Stick” (insertion hookup), but over time that will lead to some degree of vein collapse, which of course is not a good thing. Since my short-term program of 4 cycles of chemo, and with 3x2=6 Kyprolis infusions per cycle, that’s a total of only 24 IV infusions for the full course. So that doesn’t yet warrant inserting a more permanent IV “Port”, which entails a surgical procedure. And with those two infusions per week, on concurrent dates, the oncology infusion clinic nurses suggested that we could do the IV hookup on Thursday, and then leave the catheter into the vein and the flow control valves and attachment apparatus in place overnight, and so then on Friday just hook up to that again. and then remove it all after we’re done with the Friday infusion. Hey that’s a twofer – so only 12 IV sticks instead of 24 for these 4 cycles – I like the sound of that.
However, you may recall my earlier mention of having pre-paid for the Sears 9-hole Thursday evening golf league, through this summer season. Which means I’d want to find a way to play golf with the IV attachment apparatus left in place over Thursday evening. Typically, IV insertion points are into veins inside the elbow, or on the back of the hand, or in the lower arm just above the wrist. Which are all joint areas – and those joints come into play when swinging a golf club. Hm-m-m-mm.
So when I got to Northshore Oncology this past Thursday afternoon for the first Kyprolis infusion session, I explained my desires to Beth – the oncology administration nurse who was going to be helping me through the loss of my “Infusion Virginity” – and she figured out that we could do the insertion point into a vein a few inches above the wrist joint, on the inside of the radius bone, which is an area where near-surface veins can be found, and which is far enough away from the wrist joint and doesn’t flex. She did so without any difficulty hitting a vein there. Looking pretty good there, Beth. So we proceeded with the rest of the pre-infusion blood test draw, then ran in some hydration saline, then the Kyprolis itself, then another flush, then disconnected the lines and taped up the valves and connection point apparatus on the back of my lower arm above the wrist, and put an elastic sleeve on top of all that. Hey good to go – full flexibility at elbow and wrist and all hand joints – full use of arms and hands on both sides, with no discomfort on the hookup arm. Looks like this was gonna work just fine.
And with no adverse side effects having shown up at that point, I was feeling fine, and had over 90 minutes before that evening’s scheduled tee-time for my partner and I. So was raring to get out the door and on the way to the golf course. But … and there always seems to be a “But”, doesn’t there – seems mother nature had other ideas. The lab gals came back to us with the news that the pre-infusion blood draw they did at the start showed that my hemoglobin level had now dropped down into the Acute Anemia territory again. So – “Do not pass Go, do not collect $200 – go directly to the Good Shepherd ER for typing and cross-match – NOW”. So that would stage for another transfusion of Packed Red Blood Cells, which they had already schedule for 8:00 AM the following Friday morning. Well Good Shepherd is only 12 miles away, so mebbe we can make it over there and still make our slated tee-time after that. But after we got to the ER and checked in and saw the backlog of folks sitting patiently in the Lab waiting area. it was clear that golf Thu night wasn’t going to be in the cards after all. So texted my regrets to my partner and just sat down to wait. Good thing I called it off then, took over an hour before they finally called my name for the blood draw, and at that point Paul as already on the 2nd hole. Oh well.
So didn’t get a chance to try out the golf swing on the course with the IV attachment apparatus still in place. But when we got home, I did dig out my golf glove (left hand, with the IV hookup on my left arm). And then took out my driver and tried a few swings there in the front yard. Felt OK, didn’t feel any discomfort in the elbow or wrist or hand, so could focus my attention on the mechanics of my swing, instead of on whether there were any twinges from that IV apparatus still in place. By golly I think this is gonna work. Yippee <g> Then put the golf stuff away and inside for dinner. Ate very well – the docs say the Decadron (steroid) enhances appetite. Yup.
Then later that Thursday evening we went through the new daily oral medication regimen – but only after a late evening snack first – some of these oral drugs should not be taken on an empty stomach. Start with Antacid, then the big Revlimid capsule, then Allopurinol (Uric Acid Buildup Preventative), and then the prescription B-12 supplement, next a 85 mg Aspirin (clot prevention). And then to bed. Slept comfortably, and on awakening in the morning, found no evidence of side-effects. Yay Rah !! So rode Flash over to Good Shepherd for the Packed Red Blood Cells transfusion.
Including waiting time, and hookup and prep time, plus transfusion time, plus added hydration and stabilization time, by the time I got back on Flash and got home it was time for lunch, then took the Friday pre-infusion Decadron (steroid) dosage, and then onto the Mate Bike and off to Northshore Oncology for the Friday afternoon Kyprolis infusion.
By now, that second Kyprolis infusion was routine, and no problems. Hooking back up the apparatus on my left arm, still in place from the afternoon before, was simple and completely painless. Plus, no noticeable side-effects on the Kyprolis administration this time either. Really hoping that trend continues.
I brought along a small package of 20 Fanny May “Mint Meltaways” for the infusion clinic staff – at my daughter Evelyn’s suggestion, pieces small enough that everybody could try at least one – I wanna take good care of these professional and friendly and helpful folks, who are going to be taking good care of me. Call me the candy-man <g> Next week we’ll try little two-bite brownies. Future friendly “Thank You” snack suggestions very welcome, folks.
By the way, with my mobile android smart phone along through all of the above, and while hooked up for the lengthy transfusion in the morning, and through an hour here and there throughout the day, found I was able to keep up with the daily flow of business emails throughout the day – seems all these facilities have patient-access wi-fi service, so I could multi-task and be productive for my employer, as well as attending to my own personal medical needs.
Then after supper – and a Cubs win against the Reds last night, after a rain delay – then a late evening snack and then through the evening oral medications again, and then to sleep.
On arising this morning, still experiencing no negative side-effects, so we’re now completely done with the first two days of my new daily regimen. And as you can see above, have learned a great deal about what my new Thu-Fri daily activities are going to look like – excepting the PRBC transfusion, which was of course a completely unplanned “Sea Monster”. The rest of this Sat-Sun weekend, plus the Mon-Wed days 5-7 of the first week, should by now be relatively routine. At this point we seem to not have experienced any administration-related negative side effects from any of the primary drugs, which is a HUGE relief. However, then there are a raft of possible other side effects, which can emerge from the accumulative effects of all these drugs – so we’ll be vigilant regarding these over the ensuing weeks.
Life goes on.
This afternoon is the Annual Awards party for the CMSC (Chgo Metro Ski Council) Alpine Race program, so this will be an opportunity for me to spend some time with my downhill ski race friends. Last year (2016-2017 race season) I managed to achieve first place in my “C Men” class for the overall season, and got a very nice personalized jacket for that accomplishment. However, with the increased breathlessness I was experiencing over this 2017-2018 season, I didn’t fare so well this year, but it will be good to see all these wonderful downhill ski race friends one last time, before shifting solidly into summertime sports mode for the next few months.
If these full 4 cycles of Chemotherapy treatment accomplishes what they are intended to, then Sep-Oct will be when I’ll go through the Stem Cell transplant, and hopefully then my myeloma will be in remission, and I should be back in condition of ski race again when the snow flies next December. I had thought I may have to sit out next ski season, but the specialists tell me that with the autologous stem cell transplantation protocol (ie putting back in your own harvested stem cells), there are no rejection issues to deal with, and the recovery and bone marrow plasma rebuild time is quite short – weeks rather than months, which is the norm when donor tissues are being transplanted.
But that last paragraph is looking a LONG way into the future, and represents the “Best Case” scenario – and there’s a great deal we have yet to go through, as we continue to sail off into this sea of uncharted waters. So we’ll see what else crops up along the way. Until we start seeing some positive effects from the active myeloma cancer cell kill-off – the primary goal of this Chemotherapy regimen – we’ll still have the severe/acute anemia battles to deal with, and so there may be yet more PRBC transfusions in the coming weeks.
I’m finding the ongoing love and support from family and friends, in the various extended waterski and downhill ski and golfing communities that I’ve been fortunate to participate with, has kept my spirits high and outlook positive. As I think y’all can see from these first few installments, I’m committed to doing my best to manage this disease and my treatment, rather than having this disease manage my life.
So far so good. We’ll keep you in touch as this saga continues to unfold.
More to come …