Mets Day 639 – Talking with my document number of this week’s take a look at

Mets Day 639 - Talking with my document number of this week's take a look at

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This afternoon Jennifer and I met with my oncologist, Dr. Aragon-Ching, to communicate about last Tuesday's scan, and to feel my treatment chances. We had the misfortune of having an afternoon appointment, and ended up waiting for 2 hours after after our appointment time — an surprisingly lengthy wait even for GW. While waiting, I had my blood drawn and labs run, and all my counts were pleasant.
When we were eventually joined by the healthcare specialist, she gave us a replica of the NIH scan report. It noticed an "unchanged 0.8 cm left sub clavicular nodule partially imaged on the primary slice." The lungs were clean, and the total thing else inside the stomach was "unremarkable." Dr. Aragon-Ching stated that this report was the most effectual news that she might just additionally predict. She stated that there was no approach to recognize if the melanoma stopped progressing consequently of the ddMVAC chemotherapy, or if would have done that no matter even so. However, she was willing to accept as actual with that the chemo had some have an impact on, in view that this scan again measured the node at .8 cm, which was a little bit smaller than the pre-chemo scans. This suggested that the chemo might just additionally have led to the metastatic melanoma now not to most efficient cease creating, no matter to a little bit recede. She also stated that it was now not absolutely that extra chemo would have led to the melanoma to inside the reduction of any extra, so stopping the chemo after three rounds was a favorable name: I was prepared to enjoy the cruise and the holidays chemo-free, and failed to give some thing else up by now not doing the last three rounds.

Dr. Aragon-Ching advisable that, for now, I now not resume ddMVAC or have the alternative treatment. Instead, she advisable that I have fastened scans (each 2-3 months) and display computer screen my mets, and wait and spot if it begins to unfold. It's extraordinarily prone to do so — spreading is what this classification of melanoma likes to do — no matter unless it does, she saw no are looking out to subject me to any additional options. She reiterated how all of my options purely are now not intended to be healing (in view that medical doctors do now not recognize systems to cure metastatic bladder melanoma), no matter are intended to be palliative by supporting to in all probability slow the progress similtaneously easing my discomfort. Ironically, through my full melanoma journey, all of my discomfort has been led to by the facet with out drawback of my melanoma options: the primary around of chemo; the restore from surgery and my persevering with efforts to address my neobladder; and the nadir of the ddMVAC chemo.

Another money in of now not having had all six rounds of ddMVAC chemo, my healthcare specialist stated, was that, if and when the melanoma resumes spreading, we will go returned to ddMVAC again, and spot if it might in all probability paintings a 2nd time. She accompanied that, although the ddMVAC chemo wiped me out with overwhelming fatigue, I under no circumstances reached the bounds of toxicity. That resolution likely does now not be obtainable if I had done all six rounds, since I'd likely have reached biggest cumulative toxicity. I was satisfied to defer the basis of additional chemo into the undefined fate.

I asked with reference to the lingering with out drawback of the chemotherapy. I referred to how my feet get colder faster, and take longer to heat up. I've especially seen this at evening. While I was inside the course of chemo, I sometimes would alternate holding the heating pad on my stomach, and my feet. I have now not mandatory a heating pad on my stomach since I ended ddMVAC, no matter my feet feel like blocks of ice at evening — far only unheard of than beforehand the ddMVAC chemo. Dr. Aragon-Ching stated that bloodless feet is a form of neuropathy, a known facet have an impact on of ddMVAC chemo. She stated that, of the five% or so of sufferers who have neuropathy, sometimes it is exceptionally painful, such as persistent pins and needles, or stabbing pains. She stated that some sufferers with neuropathy see the signs diminish through the years, no matter as a rule it is an permanent shift. I bet I'll reside with it — especially if Jennifer continues to permit me heat up my icy feet on her. 🙂

More importantly, I am in touch with reference to the ongoing shortness of breath that I directly experience whenever I exert myself. For instance, the day past I carried two boxes of Christmas decorations down to the basement, and was sucking air after the 2nd location. That's method out of individual for me. After a chew of snow fell over the holidays, I was gasping after sort of a little while of pushing snow with a shovel. Dr. Aragon-Ching at the commence guessed that it was a lack of conditioning, no matter I knew it was something extra — it absolutely is like my lungs couldn't alternate enough oxygen. She accompanied that, in infrequent circumstances, the adriamycin (the "A" in MVAC) might in all probability have an impact on the heart. Even less elementary is the possibility of PE, or pulmonary embolism, which is a blockage of the major artery of the lung by a blood clot. She ordered most efficient a few tests — an echocardiogram to be told about my heart, and a air flow/perfusion scan (v/q scan) to be told about the flow of air and blood in my lungs. I'm scheduled to have either of these scans on January 23. If some thing else suspicious is noticed, she'll go upfront with an full-comparison CT scan. In the meantime, she stimulated me to slowly ease returned into some fastened physical recreation.

She also renewed my prescriptions for Ambien CR and Lunesta, which I purely alternate taking each evening to resource me sleep through my unpredictable nocturnal incontinence.

After we were done, she had me go over to the infusion lab so my port might just additionally be flushed. It had been two months since it was accessed, and she or he failed to need it to get blocked, like it did in 2012. That took a further hour or so of waiting for a 30 2nd system. All in all, we were at the GW offices for almost 4 hours. Jennifer and I had been looking forward to to exit to lunch after were were done; it became an early dinner.

On the ability home, we talked approximately what this capability. It's in all probability terrifi news that the melanoma has now not unfold, no matter we proceed to perceive that it is still a question of time. This scan alleviates transient term considerations, no matter as John Meynard Keynes accompanied, inside the lengthy term we are all lifeless. I do now not recognize how lengthy my run will be, no matter give thanks that for now the sun is shining.

Mets Day 638 – Good CT take a look at effects

Mets Day 638 - Good CT take a look at effects

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On Tuesday I had a first-fee CT experiment at NIH. Tonight I obtained an e mail from Dr. Apolo indicating that my metastatic cancer turn into traditional. No moreover development or spreading since my superb experiment turn into detected. The enlarged node in my neck turn into .8 cm — extra or less an analogous size as superb time. She did now not indicate the several puts of hassle. Good news!
Tomorrow afternoon I will meet with Dr. Aragon-Ching, my oncologist at GW, to debate about regardless of whether moreover therapy is fabulous positive now. She has a copy of the experiment result, and has spoken with Dr. Apolo. I'll add a first-fee post the subsequent day summarizing whereby things stand.

At this point, I don't have any suggestion what to be looking ahead to close to lengthy-term therapy in the non permanent term. Maybe now not whatever. Maybe extra chemo (no subject the simple verifiable reality that I desire now not). I doubt I'll be eligible for any clinical trials. At this point, I'm merely relieved that my cancer hasn't spread any extra.

Mets Day 628 – Out with the historic

Mets Day 628 - Out with the historic

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The vacation season has been relaxing and a chuckle. It's been stunning to have either with out doubt a sort of the an invaluable tots residing for the break, jointly with my mom and stepdad the next from Florida. We've stored arranged outings at a minimum, thank you to actuality I observe herding either with out doubt a sort of the an invaluable cats in one trail can trigger off extra stress than pleasure. Instead, every unheard of is in a place to chill down and do what they wish — each infrequently playing circle of cherished ones video games, each infrequently analyzing, each infrequently sound asleep, each infrequently dining, or each infrequently getting alongside with chums.
We did protect our Christmas Eve means of lifetime of having a honey baked ham for dinner, then every unheard of collecting as we read the story of Jesus' foundation from Luke 2. Jenifer wanted to observe A Charlie Brown Christmas — still decent after on the placement of fifty years — after which we watched A Christmas Story ("you are going to shoot your eye out!"). Amazingly, Jennifer recounted that she with out doubt now not had observed it. I idea that attempting Ralphie and his circle of cherished ones muddle in opponents to Christmas used to be a required portion of being an American.

Christmas morning we similarly adhered to our means of lifestyles that the tots can wake up as early as they wish and open their stocking affords, with out reference to this at the same time any one wakes the oldsters, then that adult opens their affords last. It's worked for 25 years, and I spotted no cause why to giant difference it, despite the undeniable actuality that Garrett used to be the solely one that used to be prone to waking up early. It's a chuckle to chill down and watch as the two adult opens a contemporary. I am instead appreciative of tools all of our tots look to be taking greater joy inside of the act of giving (which entails the thoughtful pastime of correct kind affords for the two adult) than receiving. So it is in lifestyles.

2013 ends the next day. I've with out doubt now not been a gigantic fan of celebrating New Year's Eve — it form of feels to be almost a effort for a calendar — so I doubt if we're going to be doing a executed lot extra than attempting a movie or even playing a circle of cherished ones on line game. Happy New Year to all.

Mets Day 618 – Together for the holidays

Mets Day 618 - Together for the holidays

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In the beyond week the family has accrued for the vacations. Jennifer, Chelsea, and Rose returned from the "Rose Tour" in Utah (Chelsea's clinical residency interviews interestingly have been basically a distraction, in response to other cherished ones). Kirsten full her finals at CNU, drove domestic and slept for several days. Spencer full his finals at NVCC and likewise took a extended winter's rest. Garrett's Christmas ruin starts nowadays. And on Wednesday, my mother and stepdad flew up from Florida for the vacations. It is enjoyable to have a full apartment. Yesterday and nowadays we've been baking and frosting sugar cookies — I'm doing my detail by letting my abdomen restore the ones that are broken or may still now not utterly frosted.
I've prevented the irritating procuring groceries rush by doing all of my procuring groceries on line. It's a snort to appearance for offbeat and unexpected gadgets for other cherished ones. Jennifer likewise shopped through Amazon, and whilst she was in Utah, I had approximately a dozen packing containers pile up. I was below strict commands to now not open the packing containers she had ordered, on the other hand the issue was that each one of my orders have been to her name, a outcomes of I used her Amazon Prime account and failed to annoy to modification the recipient. So after she gained returned, we rigorously opened the packing containers to inspect who was guilty for what. The supplies are steadily congregating below the tree, and the low-key anticipation steadily is growth.

Meanwhile, my incontinence has all started to reappear. Nothing commonplace — I can be dry for several nights in a row, then leak for an evening or two. There isn't clearly essentially any sample that I can pick — it appears that unrelated to extent or range of fluid consumption. Just an resolution factor I ought to contend with.

Speaking of which, my stamina has now not enhanced by a full lot. I still get effortlessly run down if I do the remaining involving physical game. I'm going to practice up with my oncologist after the vacations to locate out if she has any policies. I'm also going to have an resolution CT scan in early January to locate out if or now not it's going to select any moreover spreading of my a lot cancers. I locate that I spend little or no time questioning approximately my a lot cancers, even with the simple fact that it has reordered my lifestyles. I contend with the fallout, on the other hand a outcomes of I are now not succesful of protect watch over the dysfunction, I do now not be troubled approximately it. It is what it rather is.

Mets Day 608 – Home with the boys

Mets Day 608 - Home with the boys

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This week there's nothing on the other hand testosterone at circle of relatives. Jennifer, Chelsea, and Rose are in Utah for the week, as Chelsea interviews at 4 phenomenal residency guides. Jennifer is the babysitter, taxi driver, and sherpa, and Rose is accountable for ingesting the milk and being exceptionally. With Kirsten in university, handiest the boys are circle of relatives — Josh, Spencer, Garrett, and I. We've already scheduled a cleansing carrier to return muck out the region the day prematurely than the ladies come circle of relatives.
Garrett has had no university for the beyond two days due to ice and freezing rain the day gone by, and a forecast of up to 6" of snow at this time (we handiest ended up getting an inch or two). We have had a lazy couple of days, sleeping in, analyzing, Garrett gambling video video games, going out to devour. My calories level is still markedly down publish chemo. I wonder how lengthy the residual outcomes of the cumulative chemo burden will linger on. I'm so perfectly pleased that I have now not been continuing with the ddMVAC rounds — I can't trust how destructive I may a lot clearly very likely merely smartly also tremendously feel had I handed as a result of 6 rounds.

I've been mulling whether I like to continue on as a partner with my legislations institution, or take an eternal disability retirement. On the one hand, I like having the outstanding of returning like to my smartly-being toughen. Plus, having the ongoing get proper of entry to to the institution's smartly-being care is ok (while as a partner I pay 100% of the can fee, approximately $22,000 in preserving with year for circle of beloved ones assurance plan). On the different hand, I wonder how viable it in reality is that I may a lot clearly very likely merely smartly also ever be equipped to cross back to paintings, given the easily fact that I'm already beyond the statistical median area of moderate survival for persons with metastatic bladder very best cancers. The head of my network and different partners are encouraging me to retain my dating with the institution, on the method to attract on my time out as essential. I want to spot quickly, as my existing contract with the institution handiest is going proper as a result of the conclusion of this year.

Mets Day 605 – Garrett’s Eagle Scout Project

Mets Day 605 - Garrett's Eagle Scout Project

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Today my youngest son, Garrett, pulled off his Eagle Scout mission for the Boy Scouts of America. He had planned and coordinate your entire challenge by himself. The mission turn into to build a French drain circular a gigantic pavilion found in Frying Pan Park, one among Fairfax County's parks. The pavilion had a 12-sided metallic roof and no gutters, so the rain would doubtlessly run off and erode the earth at the lowest. Garrett found and smartly-known the mission, designed the drain manner, purchased all of the approvals, then recruited fellow scouts, church participants, and classification neighbors to disclose up and merchandising consultant.
Heavy rains had swept by means of the day formerly than as a cold the front undergone, and Saturday morning it turn into solely 30 stages with a stiff wind. Fortunately, the ground turn into now not frozen. More than 20 folk showed up to dig a trench roughly 10 inches big and a foot deep, and extra than 130 ft across the pavilion. We additional scorching chocolate and donuts, which helped develop the helpers. Garrett circulated amongst everyone, guiding them on what to do and directing your entire efforts.

I realized that I turn into then again weak from the chemotherapy — after in basic words assorted minutes of shoveling, I turn into wheezing and gasping for breath. I took some delight attempting Garrett coordinate and direct the work. He is maturing rapidly, and is overcoming the social awkwardness of mid-youth it be compounded by his Asperger Syndome.

The work moved incredibly directly, and by 1 pm all of the gravel turn into inner the ditch, the earth smoothed out, and the gazebo swept up. We were done. I turn into so appreciative of everyone who came out to assist Garrett. We again residence muddy and wet. Garrett willingly cleaned out the car and hosed off your entire gear with no reference to the incontrovertible truth that I climbed into the scorching bathtub, then took a nap.

Mets Day 596 – Giving Thanks

Mets Day 596 - Giving Thanks

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I instructed the household that this may be inevitably the fitting sort Thanksgiving that every one participants are in combination — not utilising the my melanoma (on the other hand even so the indisputable fact that infants that may be a reality), on the other hand focused on that Chelsea, Josh and Rose  circulation to Utah next summer time, and it mainly is most likely not that they're able to also nicely fly to go back again to DC for Thanksgiving, or all participants too can nicely go obtainable. Perhaps utilising the that, it became a largely mellow holiday. We played a diffusion household video games, Josh made creamed carrots, candied yams, and do-it-yourself rolls, Jennifer did her mandatory splendid job with the turkey and stuffing, and we enjoyed our meal. We watched some soccer, talked, took turns conserving Rose, and felt the triptophan kick in.
We have a Thanksgiving custom of going across the table with every one grownup naming something for which they're thankful. No one can repeat something that has already been pointed out, and the foremost one not all set to claim something or deliver up has to do the dishes. It's an exquisite methodology to watch out what every one household member comes up with: the entirety from God and the Plan of Salvation, to fractals and warm water. I became interested to watch out that there have been far fewer naming of tangible problems, and a more broad naming of relationships and intangible problems. Stuff doesn't make us cheerful; it be miles going to be the love and friendship that comes of long-lasting and trusting human bonds. I am thankful for my spouse, my infants, my son-in-regulation and granddaughter; my lengthy household; my buddies; my faith; and day to day that my life is lengthy.

Mets Day 582Of wills and shortness of breath

Mets Day 582Of wills and shortness of breath

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Yesterday Jennifer and I executed a sequence of files to replace our estate plans: wills, trusts, powerful powers of lawyer, and medical directives. We hadn't done no matter subsequently of the statement we created our first wills back in 2000, and those files have been outdated from both a tax making plans difficulty and for who would be looking after our teenagers. It became helpful to have that done.
I've slowly been recuperating, having widespread that seen that my factor of calories is swiftly sapped. For occasion, this morning Spencer and I have been doing a marginally little bit of cleanup in the yard, and after about 10 minutes I became wanting breath. It became like I would most clearly now not fill my lungs. I felt that course of after chemo, having widespread that it specially became a painful reminder that I'm on the other hand in therapy mode. I'm most clearly at 50% of familiar capability.

I'm so comfortable that I failed to do the 4th spherical the day prior to this. The thought of as spending an additional day getting poisoned became nauseating. The cumulative outcomes of the ddMVAC chemo on my formula are ongoing; I solely would like that I can slowly regain my strength and have a marginally bit more persistence. I'm thankful that I would possibly most clearly have the subsequent couple of months to revel in my domestic and the vacations, with no worrying about whether or not I can shuffle from the mattress to the chair, or fascinated by manner of if my bowels are taking walks. It's helpful to be thankful for the little joys in life.

Mets day 579 – Living like I’m demise

Mets day 579 - Living like I'm demise

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A few days ago I got here across an editorial titled "Why We Should Live Like We Were Dying" (linkhere). Instead of bucket lists, the author focuses upon what she calls a "legacy list": the tactic of building robust connections, carrying on with (or start out) relations participants traditions, and sharing memories with your relations participants. The author speaks of the ought to schedule "legacy time". What is prime to each one single adult differs, so she deals some self-evaluate questions:

What am I doing to lead a life that has an important that means?
What stories do I range to go away for others?
What do I do (or have I finished) in my life that has been impactful?
What do I range to say and do with the specific individuals in my life?
What documents and event do I have that is prime to share with my relations participants?
What number of legacy did my dad and mom go away for me? What are the a lot helpful things about their legacy and how can I reflect them?

She deals an excessively judicious deal of requirements of what ought to be would becould o.k. be on the legacy list, adding an character history or sequence of memories; favorite recipes; mementos; or traditions. "The key is to think about how you wish to be remembered. What stories would you love your relations participants to inform their relations participants about you? What examples would you love to set for destiny generations?"
I think those are questions which are helpful to each one adult to ask themselves, no longer in uncomplicated terms those who are keenly acutely conscious about their confidential looming mortality. A legacy list will no longer be be about dying, however more than one useful, positive, and substantial life.

I've been considering that pulling in mixture an character history, still it appears to be such a daunting task. I ought to in uncomplicated terms get happening collecting stories from my life. There are so much of threads to the tapestry of my life, however a lot are shrouded in my reminiscence, and nobody however me knows the manner it is woven. Unless I document it one manner or the opposite, those fragments will doubtless no longer be tied in mixture. I'm going to recommit myself to leaving a manner more advantageous legacy to my relations participants.

Mets Day 573 – Labs and CT scan basically

Mets Day 573 - Labs and CT scan basically

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Today I went to GW for lab work and to satisfy with Dr. Aragon-Ching. My counts were consistent with my prior consequences for one week post-chemo — low, then again in distinctive okay. I as well reported that, after referring to to each week of painful constipation, I would most maybe report a splashdown from simply tons of astronauts. I told my oncologist how relieved I was to be taking a destroy from chemo. I told her how we might decided to e book a last-minute cruise after I'd decided to stop after three rounds, and she or he was genuinely chuffed and supportive of my determination. We agreed to circle back after the holidays to have a look at where we were, unless something terrible took position within the period in-between.
As of my midday appointment, neither Dr. Aragon-Ching nor I had heard from Dr. Apolo with regard to the results of the day gone by's CT scan. That received correct here this evening, when Dr. Apolo regularly neatly-referred to as with fantastic news. She said that the CT scan failed to stumble on any extra a long approach-off metastases, adding the liver, which was a services and products neighborhood of hassle from the August PET scan. She said that the node in my neck measured .eight cm, which is inevitably unchanged from the 1.0 cm (10.2 mm to be particular) within the August scan. Because the CT scan slices at every .five cm, the dignity among .eight and 1.0 cm will probably be the outcome of a a chew option CT slice of the node, and she or he couldn't definitively conclude that the node within the neck had as a topic of assertion diminished in size ensuing from the ddMVAC chemo.

We discussed my determination to position on hold added chemo rounds for now. Dr. Apolo said that I had been tolerating the chemo very neatly, which was news to me. She then explained that, by tolerating the chemo neatly, she meant that I had not required hospitalizations or blood transfusions. She as well said that a performed ddMVAC routine was generally talking six rounds, and by stopping now, I was not doing the performed routine. She said that the preferable viable last outcome of ddMVAC was overall remission, then mechanically brought that happens less than five% of the time. She implied that, by not going for all six rounds, there was less of a possibility of a performed remission. She then said that it was my determination, and she or he would improve my determination either manner.

The manner I see it, the odds of performed remission are remote. A performed remission doable that once detectable a long approach-off metastases is no longer detectable. So a long approach, the ddMVAC chemo has not diminished in size the node in my neck. If that hasn't took position after three rounds, that's likely not going to happen after three extra. On the other hand, there has been no extra gather up either. But there is no manner of realizing whether or not that's a outcome of the ddMVAC, or simply that my most cancers is taking its time, or divine intervention, or ingesting Entemann's donuts. What I am express of is that, if I were to proceed chemo, I'd ponder terrible for one other two months, I would depart out the chance to have a shrewd time my thirtieth anniversary on a cruise in two weeks, and the holidays wouldn't be referring to to as glossy. I'm cozy with my determination.

Dr. Apolo agreed that she'd do one other CT scan in January. She as well said that she had installed a request to have my tissue sample from the biopsy run through NIH's gene sequencer, so we might have that counsel at our disposal if and when I have enlarged nodes and grow to be eligible for one of the gene therapy medical trials. While gene therapy looks as if it is the new frontier for most cancers treatment, I hope that my nodes continue to be small for a tremendous long time.