Cancer Crisis: the Aftermath

Don't let cancer steal second base.

As I write this it’s been less than a week since Virginia’s funeral.  I’ve spent the week at work, mainly because I needed to get back and spending the time at home in an empty house does no one any good.  In that time frame I have worked on putting Virginia’s affairs in order; paying bills, getting the death certificate, and dealing with the estate.

I have been accused of being responsible for her death, that my lack of attention and “caustic enviroment” caused her to pass so quickly.  I have been accused of whining over her death “Too #%@&-ing much”.  I’ve also been accused of using her death for personal financial gain.

To the first, I respond that the move to Holland was not a popular one with my immediate family.  Virginia and I agreed at the time that it seemed like the right thing to do but were troubled over why we had to do it.  Virginia, the family and I shared frustration over the circumstances of our situation, however never once did she accuse me of “Lording it over” the family.  In her last week of life, Virginia came to the conclusion that one of God’s reasons for having us in Holland close to my family was for the support that I’d need after she passed.

To the second, when you’ve lost your spouse of 22 years then you can tell me if I’ve been whining too much.

To the third, I never asked for the Vulcan Stev solidarity fund.  That was started by the RPG community completely of their own volition.  The news paper added the line to her obituary about memorials can be directed to the family, that was not my doing.  Am I thankful for the funds that have poured in? Yes! Are times going to be tough for me and the boys?  Yes, we lost half of the family income.  But I have asked for only one specific thing for financial help and that was after the specific request of the individual over what immediate financial help was needed.  Aside from that I have NOT asked for money.

Money can not and will not replace what I’ve lost.  Most of my tears have been in private.  If there’s one recurring phrase I’ve been hearing from everyone else it is how much my wife and I truly loved each other…

The picture posted with this blog comes from one of my Facebook friends.  Virginia lost a breast to the cancer.  Did I stop loving her? no.  I married Virginia not her boobs.  Virginia lost her hair due to the radiation treatments.  Did I stop loving her when her crowning glory vanished? no.  I shaved my own head in solidarity.  I loved and still love the person, not the shell that housed her.

When we received the diagnosis that Virginia had in fact developed breast cancer we were shocked but yet relieved.  Breast cancer was “curable”.  We were going to beat this.  Looking back at the year and a half since that diagnosis it is more obvious to me now that the cancer was taking its toll on her body.  She was tiring out more frequently.  Things that had once been easy were no longer.

The thing is now that I know more about breast cancer, I realize now that my wife was at a higher risk.  Back in the 80s Virginia’s doctor put her on birth control to help regulate a hormonal imbalance.  She took those tablets right up until the time we started actively trying for a family.  From what I’m reading the cancer that killed Virginia had been estrogen fed.  Did those birth control pills contribute to Virginia’s cancer?

Virginia had always wanted to breast-feed her children.  We determined early on when Janae was a baby that her left breast had some sort of defect the precluded milk production.  Was this defect a cause of the cancer?  We don’t know.  It is my hope that whatever scientists and doctors are working on developing a cure for cancer will take these facts into consideration.  Do not let my wife’s death be in vain.

It is my firm hope and daily prayer, that I am the last husband to lose his wife.  My children the last to lose their mother.  Mom and Dad Young the last parents to lose a daughter.

Once the bills have been payed and the children provided for, we will be taking a portion of Virginia’s life insurance and starting a fund for cancer awareness.

Don’t let cancer steal second base….  or anything else for that matter.

Cancer Crisis: Her Journey is Over… and ours has just begun.

Good Morning World.  It is 11:00 am Wednesday May 12.  I wake up this morning as a single father.  I am simply overwhelmed by the support, love, and friendship… (how do you translate tears all over the keyboard and screen?)

Virginia took her last breath at 1:2o this morning.  I stayed around doing the normal paperwork shuffle until about 3:15 this morning.  I got home at about 3:45 and shut off the phone, the alarms and went to bed.  I woke this morning to a very wet pillow and an empty bed.

Virginia’s folks and sister made it to Iowa in time to see her.  Pvt Black Spartan (Janae) made it home in time to see Mommy.  We had a ad-hoc family reunion in Virginia’s hospice room as we all shared stories of our favorite Virginia memories.

The family (especially PIT #3) started to get tired about 10:30.  11:00 I wrote the “Counting down the hours” post and read each of the 113 e-mails.  I hope everyone will forgive me for not replying personally.

Pastor Ken of my church and Pastor Troy (not my Pastor but I’ve worked with him on a number of occasions) sat with me and talked from 11:00 – 12:30.  I shared with them stories of Virginia and I.  We watched Virginia’s breathing get shallower and further apart as I held her hand.  Pastor Troy left at 12:30 and Pastor Ken sat with me.

At 1:20 this morning Virginia breathed her last.  My wife is now healed.  Praise God!  The shell she lived in on this earth is at rest.

I’ll probably be saying this a lot in the next few days.  THANK YOU!  I don’t remember who started it but the Vulcan Stev family fund is appreciated.  I never would have asked, but I’m man enough to admit we need it and I certainly won’t turn down the assistance.  Posting the link here seems a little self-serving to me (besides in all honesty I’m not sure I remember who started it or what the link is)  Again thank you.

Virginia Nibbelink is at peace.  She has fought the good fight.  She has finished her race.  The Cancer Crisis is over.

Right now plans are for her memorial service to be held Sunday morning at New Hope Fellowship in Holland, Iowa.  You are all certainly welcome to attend.

I plan to write up a post (when I’m feeling more articulate) about what Virginia meant/means to me.

I have had a number of folks tell me that my posts about the battle have been a source of inspiration (Berin, I think I understand a little how you feel).  Towards that end, I will also probably blog about how the family is coping with the transition.  I figure if what I wrote has helped folks going through similar experiences with cancer then what I write might help folks who have lost someone.

I apologize if this has been rambling.  I’m still coming to grips with the fact that Virginia isn’t coming back to this house.  She has gone home.

Virginia Nibbelink b. October 25, 1963.  Born into Eternity May 12, 2010.  Godspeed my love

Cancer Crisis: A Day Wasted or a Day Well Spent?

Tuesday the 13th Virginia and I took a day trip for a doctor appointment at the University of Iowa Hospital and Clinic (UIHC).  Last week her oncologist suggested getting a second opinion from either the UIHC or the Mayo Clinic, we’re actually a little closer to the UIHC so that’s where we went.

The appointment was scheduled for 2:00 pm, I had understood that the appointment was at 12:00 and left for Iowa City accordingly.  It was a good thing we left when did, navigating Iowa City is not for the faint of heart nor is it for the Garmin-less traveler.  We found the hospital and then realized we needed a Garmin to actually navigate the hospital complex.  We got checked in right at 12:30 and then spent the next hour and a half filling out paperwork.

We got called back for the appointment right on time and quickly discovered that the UIHC has a unique method of making sure that cell phone calls do not interrupt your visit with your doctor.  The waiting room has a nice strong clear signal but the exam rooms have none.  So for the next two and half hours we sat incommunicado.

We visited with the doctor, her nurse, her apprentice….  The diagnosis is the same.  Virginia has a VERY aggressive breast cancer that has “possibly” mutated and metastasized in the liver.  Her oncologist had only one very expensive treatment to suggest and was not very encouraging regarding Virginia’s chances.

UIHC’s Dr. Roeder had three possible treatments.  Virginia is now on a chemo pill regimen.  The paperwork has been started for the surgical SIRS-Spheres procedure.  So that’s the good news.

The not-so-good news is that the prognosis has not changed.  Of the people who have had Virginia’s specific type of cancer, 50% were gone within five years dying from other diseases that the liver could no longer fight off, 10% lived for five years or more, 10% were gone within two months, the other 30% were spread unevenly between two months and five years.  We asked about a liver transplant and were told that is not an option as every time a transplant had been attempted in cases like Virginia’s the new liver was immediately attacked.

Why was the day a possible waste?  I’m not real impressed with the UIHC pharmacy.  We dropped Virginia’s prescription off at 4:45.  At 6:0o they finally had the chemo pills filled but because somebody screwed up the filing of the paperwork and the anti-nausea pills were not filled because insurance denied the claim.  Insurance claims that we had already filled the prescription earlier.  So we spent another half hour trying to get the anti-nausea pills.  I finally just paid for the dumb things because insurance was refusing to.

So we had a nice twelve-hour day start to finish.  No change in the prognosis.  We have a few more treatment options.  As a nice coda to the day, we did find a really nice Indian restaurant in Hiawatha.  I had never tried lamb curry before.  Virginia was impressed with the eggplant dish.

We’ll keep updates coming here.  Thank you for your prayers and encouragement.

Mrs. Vulcan Stev’s Fight: I am a cancer survivor!

Sorry, this status report is so long in coming. I have been struggling with making myself sit down to write. Writing is not a favorite activity of mine, so its really no surprise that my kids don’t like to write either.

 

I have been back to work interpreting in the schools since the beginning of the school year. God has again placed me in the best situation possible with work. I am at the elementary level this year with one student. She has a deaf ed teacher there part of the day, so I am not signing all day long. I do get a break.

 

As many of you know I finished Chemo at the end of August, started radiation treatments mid-September, finished those the beginnig of November, then had my port removed. I was told that the weeks following radiation treatment would be the worst as far as fatigue. They weren’t kidding! I physically wiped out over Thanksgiving.

 

I took December slow and easy. I cut out a lot of things I normally do for the holidays. I got on to facebook to relax and not over exert myself. My counselor is glad I have taken time for myself to relax. I, however, struggle with the things that don’t get done.

 

I like my husband’s comment on facebook as to how I am. Physically every thing is checking out fine. Emotionally is a bit slower.

 

Especially hard for me is dealing with financial issues. I really don’t want to face them, but I know it is inevitable.

 

I unexpectedly had an emotionally topsy turvy time with my check-up at the Breast Care Center. Recently I have felt more down, I’m wondering if I have missed some doses of my meds.

 

My car issues I hope are soon over. I have purchased my dad’s car. After some repairs it should be a good car.

 

Winter has been rough on my right shoulder that tends to go out of place. Shoveling has been no help at all. Praise the Lord the temperatures are finally going up and melting the snow.

 

Have a wonderful March!

‘Gin

Day 163 of Being a Cancer Survivor

Once again in her own words.  Editor’s note: This was written on Saturday June 13

I had my Dr. Appointment with the Oncologist Friday. I asked about the fevers I have been spiking and took antibiotics for. I refused to go to ER the last (third) time due to they weren’t finding anything and I was already taking the antibiotic. I asked if maybe it might be due to the fact that I have hay fever and the Taxol is made from plants and trees; so could the fevers be a reaction to the plants. His response was basically “maybe.” He also said it may have been an infection actually in the port. Those infections don’t show up in their tests. A rather contradictory statement to the one I got from the Breast Care Center (the ones that put in the port) where I was told that I would have much worse symptoms if there was an infection in the port.

The end result is to wait and see what happens with these next two treatments. I will see the doctor again on June 26. The reason for this is my white blood cell counts are staying close or in the normal range for one not undergoing chemotherapy. (Thanks to the Xango juice I am downing. Xango juice is made from the mangosteen fruit and has lots of antioxidant and xanthones. The xanthones boost the immune system – the white blood cells. Its a pretty hefty expense each month but it is doing what I wanted.) As such they are not so worried about things like pneumonia, or other terrible diseases that most people can fend off. So all I have to do is bring the fevers down with Tylenol unless I start experiencing other symptoms along with it.

I asked about taking probiotics to replace the digestive bacteria, since the antibiotics kill all bacteria not just the bad ones. He looked at the bottle and said it was great that I would do that, he wished more patients would spend the money to do that.

I had one nurse comment on the fact that I actually had a smile on my face. I was feeling pretty good that day. I have also been on an anti-depressant for about two weeks perhaps that is making a noticeable difference. I did end up crying though during my chemotherapy treatment. It took forever for them to get me started, my parents had taken off shopping, and I was reading one of my books on cancer. I had quit reading about cancer because every time I did I cried. I was suppose to read all I could about cancer – the more you know the better.

My treatments for the last few weeks and at least my next two are at Covenant Hospital. They do things differently than the Cancer Center and it takes FOREVER to do. My appointment was at noon and I didn’t get done until four o’clock. According to my Dad I really scared the nurse on duty at the end. I had fallen asleep the last half hour. I was aroused to a rather loud “Are you okay? Are you okay?” She had apparently tried to arouse me before and had no response so she began to wonder if I had expired.

The late in the day and lengthy treatments means that my son will not be able to drive me. He needs to be in Holland to meet the Pepsi truck which comes in mid to late afternoon. I have drivers for the next two weeks. But if my treatments continue to be at Covenant I will need for other weeks too. Let me know if this is somethings you can do. It is a good time to go shopping in Waterloo, as you do not have to stay with me during treatments.

Today I have been feeling pretty good. My temperature has been holding at my normal (the 97′s) or lower than my normal. I have done a lot of work this afternoon. My parents didn’t leave until eleven o’clock. So I really didn’t get started on my day until after that. I really want to write my daughter today and I think that will end my day.

Day 146 of being a Cancer Survivor

Wow has it really been over a  monthsince the last update on Mrs VS?  I guess so.  She is done with the bi-weekly treatments and has started the weekly doses.  Her folks have come down to be here for the graduation of PIT #1.  The stress of everything was causing her some problems.  Her white cell count was down last week and Dr. S. postponed last week’s treatment until this week to give her the weekend of graduation at full strength.

We went to PIT #1′s graduation (that’ll still be her code name here even though she is now a full fledged Paladin) on Sunday 24th.  Memorial Day we went to a Renaissance Faire and spent a good portion of the day in drizzle.  We had fun but I’ll fill in those details in another post.  Tuesday, I went back to work with Mrs. VS feeling a little tired from the long weekend.  Had to make a Can Company run after work and was gone for most of the day.

When I got home Tuesday evening, Mrs. VS was complaining of feeling cold.  She took her temp and discovered it was 100.9.  Now concerned about her temp and under orders from the Oncologist to report anything of the like she called the doctor’s 24-hour line.  We were told to get to ER, NOW!  Not a problem, I’ll get her to the local ER.  She is after all the woman I pledged to love honor and protect.

Not so fast the doctor sez, you need to go to Allen Hospital in the city.  OK that’s a 40 minute drive one-way and it is currently 9:20 at night.  We get the PITs ready for bed, get in the car and go.  We finally get to ER at a little after10:00 pm.  Three hours later, Mrs. VS is diagnosed with a severe Viral Syndrome, or as us common folk call it, a cold.  Tired beyond belief at this point, we get back in the car and drive home arriving there at about 2:00 am.  The alarm went off at 6:00 am to wake me for work.

Mrs. VS stayed home all day Wednesday sleeping off her Viral Syndrome.  Today, she went in to get her chemo treatment.  Unfortunately the Oncologist’s office had forgotten to order her meds.  She went on a merry goose chase trying to get chemo done at one of the hospitals.  After a nice round of “Bureaucracy” (RPG coming soon) it was determined that she’d have her chemo treatment tomorrow.

That covers Mrs. VS but doesn’t even scratch the surface here at the VS household.  Look for an Iowa Cornfield post soon.

Day 96 of Being a Cancer Survivor

In her own words today.

This past week has been okay. The family doctor said I no longer had an ear infection. I do however still have a lot of mucus that I am hacking up or blowing out my nose. It is yellowish in the morning mostly but clears up during the day when I am upright. I have been able to get a lot of things done during this week. I really feel it the second day if I missed a nap time. I had more fluid drained off on Tuesday. I have a referral for therapy for lymphedema, we want to keep it to a minimum. I made it to a wig shoppe and bought wig shampoo and conditioner. I have washed all my wigs now.

The chiropractor/nutritionist told me that chemo works better on a two day fast. I have done this all three times. This time water was tasting pretty bad so I drank more green tea. This morning I had a slight headache. Didn’t pay much attention to it figured most likely due to hungry. Anyway, after chemo and finally eating something I had diarrhea three times in an hour and a half. They were all yellow in color. After a nap I had more diarrhea, this time dark green. I called the cancer center and they want me to do a stool sample and then take it to the hospital lab to be tested. It is now 9:30 pm and I have not stooled. Normally I get constipated from the chemo so I am on a stool softener. I think I will not take that tonight. Because I have not had any vomiting the doctor is asking me to try and not take one of my medications. He says it has nastier side effects and so would like to reduce its consumption. I stayed home from my children’s play tonight as I did not want to have diarrhea at the school. I went to see the play yesterday when they did it for the middle-schoolers so I did not miss the play.

Well, that about sums me up. I am looking forward to the warmer weather so I can do some planting. I am going to try a containerized garden.

Day 87 of Being a Cancer Survivor

This morning Mrs. VS woke up to find most of her hair in her pillow.  She was understandably upset.  At her insistence we went downstairs and shaved off the remainder of her hair.  AS tears streamed down her face I took her in my arms and kissed the now bald head and told her I loved her.  Her expression of disbelief told me I need to do more than just words.  Her face took on a puzzled expression when I took the shaver and started cutting off my own hair.

She’s still upset over the hair loss, but at least there’s a small glimmer of a smile.  She even went a got a green wig (green being my favorite color) and is wearing that around the house today.

Friday’s chemotherapy went better than two weeks ago.  Mrs. VS handled it better without quite as much nausea for the first few days.  However yesterday food started tasting nasty again.  Rather than read my filtered perceptions, here’s Mrs. VS in her own words.
I received second chemo treatment on April 3. The weekend went better than the first chemo treatment weekend. Being on an antibiotic for the ear infection really helped. Yesterday was my last day of antibiotics. It still feels like I have some oceans in my ears, but they don’t hurt. Just a bunch of mucus. I have a recheck on the ears on Mon. April 13. I have been losing my hair all week long. Today it was so scratchy I just pulled it out. What didn’t come out was then shaved, there wasn’t much left. My kids thought I should wear the green wig first so I have green hair today. I am in the phase were I feel like I am made of ooze. It leaves me with an imbalance and I notice my vision is not the sharpest either. Every thing tastes terrible, metallic like. There is some nausea associated with the terrible tastes of everything. I am pretty tired, and I get dry really fast.

Day 77 of being a cancer survivor

This morning Mrs. VS woke up at 4:30 with a severe ear ache.  She was in tears when I woke up at 6:00.  Called the Oncologist per their instructions.  Got permission to get Mrs. VS to ER (apparently the oncologist wants be kept appraised of Mrs. VS’s medical condition).

The ER doc took one look into Mrs. VS’s ear and concluded she had an ear infection, probably brought on because she already had a cold when she sarted Chemo.  We have another chemo appointment this Friday and we’ll be keeping an eye on her ear.

Day 73 of Being a Cancer Survivor

I received an e-mail today asking why there weren’t daily updates regarding Mrs. VS.  The simple answer is that most days the update would read.  Mrs. VS got up, fixed herself breakfast.  After kids and husband left she sat down and folded laundry / played computer / cried.  She got tired and napped until kids came home / husband came home / dog woke her up.  Went to bed after supper and was rudely awakened when thoughtless husband came to bed two hours later.  Post like that would tend to get monotonous and repetitive after awhile.  I’ll be updating weekly unless there’s Earth-Shattering news….  Today qualifies as Earth Shattering.

First status in Mrs VS’s own words….

Being that I have both chemo and cold it is hard to tell what symptoms are from what. I just feel cruddy. Obviously the cold has me feeling congested and occasionally hacking up yucky stuff. I’ve also faced headache, and earaches. At first I faced some sore throat too. Other symptoms I have had are constipation, nausea, unsteadiness on my feet, some disorientation/confusion. My vision has been a little weird and nothing tastes right. Not even water. My jaw and teeth seem to have tightened, flossing has become difficult. Although I haven’t lost any hair yet my head does feel wierd, my hair seems coarser and my head itches frequently. I have also noticed I have become very sun sensitive. I walked the dog once and that is all it took to get a sunburn. I need to make sure I use sunscreen even on cloudy days. Tired is another thing I feel alot. Some of my meds even cause drowsiness. Anyway, the treatment for chemo seems to be to get plenty of liquid and plenty of rest. The way to beat a cold is to drink plenty of liquid and get plenty of rest. It seems the course for me right now is to get plenty of liquid and plenty of rest.

Today when I came home from my bar run, Mrs. VS was feeling VERY depressed.  She was considering leaving us and going away because she was feeling useless.  She doesn’t think she’s being much help with the Can Company.  She knows she’s not being much help with the puppet team.  She can’t help me out with open game night when she’s feeling sick.  She was just feeling useless.

I spent the better part of the afternoon talking with her and trying to figure out what we could do to help her feel less useless.  Mrs. VS confided in me that she had been asked by a co-worker to come to the co-worker’s church and help out with their deaf ministry, Mrs. VS is an interpreter for the Deaf by trade.  She politely turned them down thinking that because I’m involved with the Children’s programs at our own church, she wouldn’t be able to attend a different church on regular basis without causing some problems.

There currently is no deaf ministry at our church and honestly I can’t think of any deaf people in our community.  So I discussed this with the Senior Pastor.  His solution was rather elegant.  Rather than making a big deal about Mrs. VS leaving our church to attend elsewhere, he wants to officially send her out as a missionary from our church to the church with the Deaf Ministry.  She’ll still be part of our church just doing what she does best at a place that actually needs her skills.

Mrs. VS brightened immediately at this suggestion.  I haven’t seen a smile on her face since she started the chemo.  Thanks Pastor Gary for taking what could have been a problem and turning it into something positive.

Unless there is something major, I’ll post again next week Friday.  Check my Twitter Feed or Facebook for listings of new posts.  I know that there are lot of folks that check this blog for updates about Mrs. VS but don’t really care to read about my RPG stuff.