All is well... today!

Blessing and Grace… I have certainly seen both in this “True and Amazing Adventure with Cancer”.    Tomorrow marks 2 months since his surgery date!  We saw his facial nerve surgeon on Monday.  She was absolutely thrilled with how well his forearm is healing (FINALLY!)  As he was speaking to him about his arm, she became VERY excited about his face when she noticed both sides animating!  She stopped, and put him through various facial exercises, and both sides of his face (albeit the left weaker than the right) were animated.  She was laughing and smiling and told us he is 3 months ahead of schedule for the facial nerve to start animating!  Then when Kevin told her about the shooting pains he gets along the nerve from time time… that confirmed it; his new nerve is definitely working toward WORKING! 

She had NOT scheduled a meeting with the physical therapist, but given how ahead of schedule he is, pulled her in and gave her time to work with him.  Right now, we are not scheduled to go back up to Michigan until May 19!  

As for the radiation therapy and chemo, he’s really doing well.  Some of the symptoms he was told about with radiation are starting; his saliva is thickening, and swallowing is more challenging…but other than that, he seems to be tolerating it well.  The chemo is weekly, a 3 hour infusion of chemo agent, with another couple of hours of hydration.  He hasn’t had much nausea, he hasn’t lost his hair (Thank you, Lord; the man has the most gorgeous hair!!!) but he has found that every week, by Thursday, he starts to experience fatigue, and anxiety.  Friday, by end of day, he says it’s like someone just pulled the plug and he is absolutely done; it comes on suddenly, and can also be combined with the anxiety.  We get him into bed, and he sleeps through Saturday morning, feeling much better, and with full appetite!

He discussed this with the radiology nurse, who asked the obvious question:  Are you taking your anti-anxiety meds (Ativan)?   (No.)  The reason being, the drug is billed as “anti-nausea and anti-anxiety.”  Since he wasn’t nauseous… the nurse said, with a straight face, “Well, it’s anti-nausea because it will put you to sleep, and then you won’t be nauseated anymore.”  Good point!  He promised to start taking it!

He is making Chemo Friends!  They are all there together, going through the same thing… it was at that point I suggested he do Facebook.  For awhile now, when I take my Ipad to bed and check Facebook, and he’s snuggled up next to me reading all the posts.  I knew it was time… so I launched him!  Now the second I go to sleep, he’s on my Ipad checking his facebook!  Very cute.  I sent him some pictures (since I am keeper of all the photos!) so he can post them!!  (I tried tagging them and they reposted on MY facebook!  When Old People try to Facebook!!!)

We are still surrounded by the Grace and Blessing of friends and family…primarily in assisting with driving back and forth to doctor appointments, radiation and chemo.  I take him in the morning and drop him off; on Tuesday I stay while he gets radiation, then take him to chemo.  There is always a wonderful friend on the other end picking him up.

He retired the Friday before his Tuesday surgery…!  What a way to enter retirement!  But in spite of the medical treatments, I think he’s enjoying his retirement; albeit he will enjoy it far more when he can DRIVE! 

There are scary times.  When he loses all of his energy and is feeling anxious, I would do anything there is to make him well; at the same time, I know that this is FAR easier than we anticipated, and I
am grateful.  So many have it far worse!


Our friend, Amanda Cragen, who moved to Boston to go to grad school, and then to NYC came into town on her way to her niece’s birthday in Martinsville, IN.  She stayed longer than usual for love and support… that was fantastic

As the song says, we get by with a little help from our friends!

Cancer: It truly IS a small world (after all)

It IS a small world, and I am finding you can throw a rock in any direction and hit a cancer survivor, or someone whose life has been touched by it.  A department head here at ND asked for a meeting with me ( new federal regulations deal with a part of my job that interfaces with his department).  He pushed for an 8am meeting, and I had to push for later (because of driving Kevin to his a.m. appointments); finally, so as not to appear as either a slacker or simply uncooperative, I said that on Friday mornings at 8am, I was dropping my husband off for radiation treatments, so given driving distance and parking at Notre Dame, even 8:30 was a stretch, and could we please push it to later.  He immediately offered up 9:30.  He began our meeting today asking questions about Kevin’s cancer and treatment, and shared that his wife was 1 year out from her cancer treatment, is in remission and doing well.  She is the mother of 3 children; the youngest 18 months when she was diagnosed.  We talked a lot about what it
was like for them, and he was so kind in asking me how it was going for me. WOW.  MUCH easier, I am certain, for me than for ANYONE who has children; particularly small children.

I was 23 when my mother died of breast cancer, which recurred in her liver.  We had about a year from the time of that diagnosis until her death.  As her younger daughter, it was ALLLLLLL about ME, and my pain, and my losing my mother (she and my sister and I were extremely close); but now, as my friends’ children (particularly daughters) who have reached that age, I watch my friends, and I see my mother… with a NEW appreciation for what she faced; leaving her daughters, (me in particular.  My sister was settled, married, children, and happy in her life; I was in flux in so many areas (also known as, "a hot mess!") and emotionally utterly dependent upon her.)  God granted her His amazing Grace, and, possibly some “insider information,” that against all apparent odds, I would be fine, and in fact, would flourish.  I hope so.  I can't imagine anything worse than leaving a child in those circumstances through no fault of your own.

Today, I see much Grace, and many blessings in our situation.  Kevin has had 1 chemo treatment, and 2 radiation treatments; so far, no side effects, and he feels confident about these 6 weeks of treatment.  His chemo agent is Cisplatin, mid-range between horrible nasty-bad side effects, and no side effects at all.  His dosage is in the lower mid-range, so there is certainly reason to believe he may not be horribly impacted by this. 

He recently saw the ENT who did his initial surgery that sent him to the U of M, who was very impressed at his level of healing, indicating Kevin has a strong immune system.

We are surrounded by wonderful friends and neighbors who are so supportive and kind, and willing to give their time and energy to making our lives easier.   Even our cats are stepping up; Camilla, our older kitty, sticks close to Kevin, and our “baby kitten,“ Priscilla, (feral cat who believes that, other than me, everyone is a dangerous stranger, including Kevin) is starting to stay close by him as well, chirping and gerbiling to him, and even allowing him to pet her.  (Kitty Healing Magic.)

We have a nutritionist with great advice on the care and feeding of Kevin during radiation, when his taste buds may crash, and he may lose his appetite completely, and in any case, probably won’t want to eat.  Thanks to family members and friends, I have received a good range of recipes; most of which I've been test-driving on Kevin to make sure he likes them; all have been given the thumbs up.  I’m doing a lot of cooking ahead now so I can make sure he is well supplied with mini-meals and snacks that are high protein, high fat and  high calories.  Seems so counter-intuitive to my normal cooking, but I have it on GREAT authority that this is what will get him through!  (And will be a damned shame if he DOES lose his appetite, because believe me, he will never pass THIS way again!!!)

It truly is a rather amazing adventure.  It's not one I ever envisioned, or one I particularly wanted, but one which is daily infused with Grace and Blessing when I remember to ask -- and look for it.

 

 

Being the Grace... Being the Blessing...

Today my fervent prayer continues to be…"let me see the Grace and blessing in this situation…"  The response resounding in my head (and also a quote from Rocky Horror Picture Show) … is, “Don’t just dream it… BE IT!”  I thought it was tricky business just to SEE the grace and blessing… but BEING the grace and blessing… that’s where the going really gets tough.

We are venturing into unknown territory; the territory of Radiation and Chemotherapy; radiation 5 days a week; chemo 1 day a week.  Adding to this is Kevin’s seroma that continues to fill up where his drain used to be, and has filled up so much that radiation is post-phoned until it can be drained; coincidentally by the FIRST ENT that started us on this magical mystery tour of cancer.  His radiology staff was able to bump up his appointment with the ENT up to a day earlier; suggesting that he get on the ENT appointment schedule for weekly visits until the seroma goes away.  (Note:  I will definitely be asking serious questions about THIS little post-surgery gift when we go back up to U of M on the 24^th…)

So…. besides Kevin’s physical discomfort, and the disconcertion of so much unknown; what will radiation therapy be like for him, and what side effects will he experience, he has to put off the radiation for two days. 

Sunday, I spent the day cooking foods high in protein and calories that were also somewhat bland, yet nutritionally sound.  We’ve been warned; once the radiation kicks in, as well as the chemo, he won’t feel like eating, and yet has to consume about 3 times the normal amount of calories.  Like our beloved Camilla kitty (and apparently, all cats)… when he doesn’t feel like eating… he simply doesn’t.  Having had MUCH experience trying to convince Camilla that she has to eat, tempting her with every single sort of tasty treat I can think of, I do not relish going through this with Kevin.  (For example, I frequently pry open Camilla’s jaws and force tidbits into her mouth to get her taste buds up and running…I tremble at the thought of trying that on Kevin!!)

This morning, between running and bathing, I packed a “to go” bag for Kevin to take with him to chemo (6 hours.)  I packed 3 different kinds of cheese, sliced, with a variety of crackers, some turkey sticks, some cheddar cauliflower muffins, some high-protein, homemade oatmeal bars (made with applesauce, mashed bananas, almond milk, a mixture of sprouted pepitas, sunflower seeds, raisins, dried cranberries, and carob chips,) some chocolate tofu pudding, a small plate and flatware, and a napkin.  I reflected upon all of the things my sister used to do daily for her husband when he was stricken with ALS (9 years total) – with a MUCH different understanding today than I had then.  These tasks now seem like such a BLESSING for me to have the opportunity to do, now that it is MY precious husband who cannot do them (would not do them) for himself.

Some days, he breaks my heart when he expresses his view that I have “given up” so much to take care of him; or taken on so many “burdens” to take care of him… neither of those things are true.  I do not honestly believe I have “given up” anything.  I frequently make choices to stay home versus time with friends – because that is what my sense of self-care is directing me to do.  And, there are times I DO go to be with friends, for the same reason.  I am NOT a martyr (as anyone who knows me well knows!  I haven’t been called a “princess” most of my life for nothing!!) – but providing my husband with the elements of comfort I CAN – is definitely a gift I give to myself.  Seeing Kevin in discomfort is absolutely the hardest part of this journey.  Except when it’s the second hardest part.  (Conversely, while he breaks my heart giving me TOO much credit; there are moments, albeit very few, when I get NO credit, which also breaks my heart!)  (Obviously I have a contrary nature, I just can’t be pleased!!!)

I know in my head, that he and I have a very different approach to life.  I am a physical person; I LIVE in my body; I have great CONFIDENCE in my body and all of its amazing abilities.  I don’t get sick very much at all, and even when the random and odd physical ailments have led to surgeries, I have had every confidence that I would be up and running sooner rather than later. 

Kevin is a HEAD person; he can do quantum theories in his head; he loves to spend hours with his computer, loves solving issues and problems that require extreme mental concentration.  When his body is out of whack, he has no context to understanding how quickly one can and will heal.  So having a disease that is currently informing MOST of his life… is very far out of his comfort zone.  It is taking him away from doing the things he loves best; one of which is “taking care of” me/us.

If life were art... I would be painting abstract pictures of vivid colors and shapes and swirls and splotches; Kevin would be doing finely drawn pen and ink.

In the interest of full disclosure, I think there is a part of me (and possibly not a small part) that subconsciously hasn’t fully accepted that piece of his disease...that his focus and energy has to be on healing, and as an introvert, as my introverted friends have pointed out, that often means he needs to go deep within.  Scientific evidence says men’s corpus callosum is smaller than women’s, consequently, men can’t think and feel at the same time (distilling the difference to a simple form)… so…he is spending a great deal of time deeply inward and thinking it all through, which makes him appear less emotional accessible.

In MY head, I am super-woman; I can do it all – I can do all of the extra physical chores needing to be done (I can) and still carry the bulk of the emotional part of the relationship… until I can’t.  And that’s when my life feels off-kilter, and I start feeling like my world is out of control.  And I “MIGHT” be taking it out on him; and I MIGHT be trying to completely deny his need for going deep inside, to FOCUS ON ME… which may be what the message I opened with means.  Being the grace and being the blessing in this situation may simply mean allowing Kevin to go where he needs to go right now, deep inside where he can process what is happening to him in his own way and his own time; letting him be safe in doing that while I rely on my OWN resources; inner and outer.

Don’t just dream it… be it!

Doing the Chemo Dance

I was going to title this:  The Chemo Dance, doing the dance of death… but thought that title might be off-putting and giving the wrong idea!

Recap:  The day of Kevin’s surgery at the University of Michigan, Dr. Bradford, the primary surgeon, talked to me immediately following her part in the surgery.  I know that stress causes memory problems; I know that my brain continues to simply stop for short moments, and my memory bank is not what it once was.  But in ALL  matters of all things “Kevin’s Cancer”, I have the sensitivity of a hunting dog, poised for every single nuance, word, facial expression, or body language; I am acutely aware of all that is said, left unsaid, and intimated by an expression or an eyebrow lift… so … I know EXACTLY what she said to me.

 She said she was able to get clear margins with the tumor (excellent news), but that one of the dissected lymph nodes was suspicious; but we wouldn’t know for certain until the path report returned. Even so, she felt confident there was lymph node involvement.  When I asked what this meant; she responded, “We will be more aggressive.”  When I asked what that meant, she said, “Chemotherapy.”  She then said, “There is a clinical study on the combination of chemo and radiation that I would like to put him on if it is in your area.”  Period.  Full Stop.

At our follow-up visit on February 24, she confirmed that out of 38 dissected lymph nodes, 4 were found with tumor.  (We already knew this from our radiologist.)  She went on to say, she wanted him on the clinical study which treats with radiation concurrent with chemotherapy, IF IT WAS AVAILABLE IN OUR AREA.  When I asked, what if it is not, she said she would not sanction any other chemotherapy, and when asked why not, she said there was “no definitive evidence” that this made an impact on recurrent disease vs radiation alone.  The “I will not sanction…”troubled me, but until we knew whether or not this was an issue…I let it be.

Thinking perhaps this was an insurance issue; that, if our surgeon didn’t give her approval, coverage would be denied, Kevin contacted his insurance company, and found them extremely supportive. saying it was NOT a procedure that required pre-certification, and even if it did, they would look at the recommendation of the oncologist if it was differing from the surgeon.

Back in South Bend, we learned the study is not open in our area.  Both our radiologist and our oncologist believe chemo is definitely indicated.  Our radiologist suggested that he have a conversation with Dr. Bradford after he consulted with our oncologist.  We agreed; but, after our conversation yesterday with our oncologist (who stated that while he fully supports this study, the reason combining chemotherapy with radiation isn’t considered the “standard of care”, it is only because a clinical study has not been done previously, providing evidence that is should be.  However, he has been (administering the chemo in patients with this type of tumor, in combination with radiation, and the results in his practice have been a 50% less rate of recurrence.  SOLD!

To be perfectly honest, I spent 11 years working in a Clinical Cancer Center for a gyn oncologist who was a dedicated researcher, and who developed multiple protocols that became clinical studies, and went on to become first and second line treatments for gynecologic cancers.

 A clinical study is usually randomized, and blind; there is no guarantee that the Human Subject will get drug or a placebo.  I love science, I am grateful for all of those who have gone before and were willing to do this.  Frankly, I am just not ready to see Kevin donate his body to science, so I am perfectly happy knowing he is not part of a clinical study.  I remember well the Greys Anatomy story when the blind clinical study Meredith was conducting on Alzheimers, and the Chief’s wife was in that study.  He BEGGED Meredith to find out whether or not Adele was getting drug or placebo, and when it was found that she was assigned placebo, he begged Meredith to switch her file, and she did.  I got it then; but I REALLY get it now!

He will be having radiation therapy daily for 15 minutes for 6 weeks; weekly, he will then go to the Infusion Center at the Hematology Oncology center, and will undergo cisplatin infusion for 3 hours, followed by another 3 hours of infusion of “medication”.  I will be attending the one hour information session on Tuesday so will be much smarter about this at that time.  Cisplatin is a “mid-range” drug as far as side effects go.  It’s not free and easy as some are, nor is it the worst.  He will “most likely” lose his gorgeous, thick hair (but it will grow back!) and will probably experience some degree of nausea and possibly vomiting, but there are drugs to ease that.

Our oncologist also explained to Kevin the difference in staging the tumor found in an organ, or in other head and neck areas, and a gland.  MUCH less scary.  Once again, he confirmed that this is TREATABLE.

After carrying these questions around in my head for awhile, the relief to  finally have a course of action that feels “right” has lifted my spirits.

What IS that STRANGE sensation in my body?  OH!  I believe it is called “appetite”!  Who knew stress could kill that!

 

 

The Patron Saint of Caregivers

Who is the patron saint of caregivers?  I know that St. Rita is the patron saint of women who take care of women (not to dis St. Rita, but that's a fairly narrow category, and I don't know how flexible she is). I know of her because Kevin gave me a statue of her, along with a card outlining who she was and what she does.  I like that he knows this, and I love that he sees me as fitting into that category!  But now I want a patron saint who is a generalist.  (I nominate my mother, and perhaps she could round up a few of her heavenly cronies, and create a consortium of patron saints of caregivers...)

Yesterday was challenging.  I was coming out of one of the most stressful work weeks imaginable, and even after a fabulous evening with my friend, I was still carrying it.  Kevin is clearly struggling with the limitations of a 1 armed man, so much so that in spite of the result of his vacuuming and snowblowing, or I should say, even though after those two activities last week, we landed inAnn Arbor with his extremely swollen hand, and a wound not as healed sati should be, and wound care stepped up to 3 times daily,and a strong warning NOT to use it, Kevin still wants  to do the things he has always done so I do not have to do it all.  I get that, but iris FAR more stressful for me when he wants to ignore medical advice, and becomes difficult when I JUST SAY NO.

Combine that with errand running.  Typically we do a lot of that together(with him driving; a significant difference!). These days,whIle I truly don't mind the added responsibilities, "for the cause"' my challenge becomes balancing social activities with down time where I can be alone.  Sometimes, just being alone in my car, doing errands and listening to my audiobook is that time. Yesterday, Kevin  needed to run an errand, which meant he could accompany me, or...I could do mine and he could...walk 6 miles in the snow both ways...so I of course I
"Graciously" allowed he could come with me.  ( it MAY have been my graciousness that set the tone for the rest of the day...)

Clearly Kevin did not get the memo.
1.  I may be directionally impaired, but when driving in my own neighborhood, to places I drive to on a regular basis, please do not navigate.

2.  Unless there is every indication that I am going to careen out of control and slam into another driver, a pedestrian, a wall or anyone or thing else, it's just not necessary to scream "watch out!" At full volume.

3.  Along those lines, unless I pull out a book and start to read, it is not necessary to shout, "GO! GO! GO!" When the light turns green.

4.  If I leave the road, and go sailing through private yards or farmer's fields, then AND ONLY THEN or under similar circumstances , is it appropriate to scream, "where are you going!?!"  Refer to 1, relax and enjoy the ride.

5.   I am not new to parking lots, been to that rodeo before.  I can tell the difference between an empty spot, an occupied spot and the road.  Again, no need to navigate.

I may have tried to ditch him in the grocery store.  Okay.  I may have ditched him in the grocery store, but I did go back and get him well before I checked out.(of the store)

Once home, he had the sense God gave a goose to go up to his den and close the door after putting away the groceries. ( if I can just interject, why is it the things they CAN do to help us without causing harm to them are not really something they want to do?). I cleaned the house, vacuumed up and downstairs, did 3 loads of laundry and cooked ahead, AND had lovely diviner on the table before 7pm.  I certainly felt 100% better! Apparently, so did he,.  While waiting for the new season to start, we have been watching old West Wing episodes, and enjoying them every bit as much as when they were new.  We were fine by that point, laughing and enjoying each other as usual...but I could still use that Patron Saint; as Scarlett O'Hara said, tomorrow is another day.