Category: Bone Marrow

Thanks Leukemia for reminding me you are still here.

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Three weeks since my last posting, holy shit where did the time go? Apparently Leukemia needed to remind us it is still here?

Seriously what a busy three weeks it has been too! Children out of school, working to prepare the ranch and Jake for a week-long stint in Bishop California for the CHSRA High school rodeo finals, setting Cody up for success in caring for his mother and siblings while we were away, fixing then re-fixing, then repairing only to abandon my truck because she just couldn’t make the trip to bishop hauling our living quarters horse trailer. Borrowing a friends truck (thank goodness for good friends) to make the trip safely, then watching as Jake finished 11th in the state steer wrestling and 17th in the state cutting.  He was the only rookie to make it into the finals for steer wrestling! Something he is and should be very proud of as the finals were filled with some of the most talented kids I have ever seen!

This all leads us to today.

This morning I awoke pondering yesterday and tomorrow. Yesterday we (Jacy and I) spent the whole day at Stanford signing paperwork (you know the dont sue us if something catastrophic happens legal mumbo jumbo), meeting with doctors, understanding the upcoming schedule; more lab work, heart monitoring, and ultimately the dreaded sit down talk where we learn from -0 day-to-day +1 what will be happening to her body and what might possibly happen to her body in the form of acceptance or rejection.

The first week will be 16 doses of chemotherapy so strong it could quite possibly kill her, of course only in a low percentage of patients, but it does do damage to the heart muscle, kidneys and liver. She will be very sick during this time and I will not go into the specifics as it crosses over ones privacy.  Once she is down to zero or no immune system what so ever, she will receive the Bone Marrow transplant, which consists of nothing more than stem cells transmitted through a blood transfusion.  She will be given drugs to suppress the new immune system which have a whole slew of nasty side effects of their own. The new immune system will need to find its way through her body on its own without overreacting to its new home. This will be over the course of the next few weeks and where odds are strong some form of graph vs host disease will take place.

Graph vs host can lead to anything from minor sores in the mouth to minor or major skin irritation to life threatening rejection to which we are told things “could” get quite dicey if that takes place. Phew! Nothing to be scared of yet, right?

If all goes well, the body accepts the graph with the help a few drugs then within three weeks she can leave to outpatient treatment where her caregiver (me, parents and siblings) will monitor everything she eats, her temps, appetite and overall demeanor.  Once she hits the 12 week mark with steady improvement she has the ability to come home.  Yay!

Once at home (get ready for this) Jacy, who lives on a ranch and loves her horse more than most people like their friends; will not be allowed near the horses for up too two years! She also has to wait a minimum of a year just to go back to work and be surrounded by the young minds she loves so!! Listen I can hear you all now: hey at least she will be alive right? Yes this is true. But look at it this way, everything short of your children that you love has been taken away then held right out of reach for you to see everyday.  That would be pretty painful and hard to handle while keeping a positive attitude about survival. You are alive and it does leave something to fight or look forward too, but can be depressing at the same time.

Tomorrow

So tomorrow is that day. WE load up the toters she has packed her life into over the weekend; she kisses her children goodbye (the hardest things she has ever had to do) and we make what I assume will be a very somber, quiet, fear/tear filled trip to her new home for the next three to four months. I will then have a very hard ride home as now I will truly be a single dad with only being able to visit a couple of times a week per her wishes. (her wish is to keep the kids having a normal life and summer before school) Once school starts I will be there everyday if possible, running back and forth to be by her side. She knows what lays in store, she knows there will be days of doubt, pain, sickness and struggle, she knows that the outcome is unknown as to severity of reaction and she knows it is going to be hard, very hard.

She also knows she has a whole crew of people praying, she knows she has the unconditional love of an entire family, and she knows I love her more than anything in the world. In her heart she knows she will beat this and win.

This morning I stared at her sleeping knowing it will be one of the last mornings for a very long time I will see her angelic face next to mine. I fu%#ing hate this shit!

Deep breath, stand strong, we will survive this and she will kick cancers ass one more time!

keep calm

The final countdown

theycallmebetty4 Comments

Kaiser Hospital is the happening place! Anybody who is anybody goes there and only the most beautiful of people roam these hallowed halls of floor number five. Checking in today felt so normal, familiar like one feels when putting on their pants. Pulling up to the front, participation for all aspects of moving into Chez’ Kaiser no longer requires attention from both parties. Previous trips required my service in moving luggage, assisting with check in and holding her hand all the way into what ever guest suite we had been assigned. But no more! Unfortunately or fortunately depending on how your perception clarifies this murky glass, my role has been downgraded to nothing more than that of husband dropping wife off for work status. Not that I am any less important, it just seems as though our journey has over time become routine.

Once inside her luxury suite, smiles laughter and hugs are had by all who grace this threshold. It really is like coming home from an extended journey. That is if home has an adjustable bed, vinyl curtains, bleached floors, IV stand that looks like R2D2’s anorexic cousin, a really small TV with a channel solely devoted to showing some random nature picture luring your delirious mind into believing one day you will get outside again. One cannot discount the three square meals a day, nutritionally balanced to meet your every carbohydrate need. Yepper it is just like home!

I know I have said this before but I feel the importance to reiterate just how much I love the staff here at Kaiser Vallejo! They are some of the warmest, kindest human beings in medicine! It is obvious it takes a special person to handle cancer patients, let alone continue treating each and every patient as though they are family.  I have never feared leaving my wife here, not one time! My wife means everything to me and you cant put a price on that type of mental security.

Dr. Truong arrived a few minutes after Jacy settled in, it was great to see her! Dr. Truong has a genuine smile, a kind heart and has been the largest advocate for my wifes care. She also leaves us feeling like we are part of her family. Jacy and I are always super happy to see her; she gives us straight facts, tells us what path we are on, and listens to any concerns we might have with a kind ear.  Jacy has felt blessed from the moment we connected with Dr. Truong and that has been a blessing as well. Nothing beats having the utmost confidence in your doctor and the care you are receiving!

After a brief rundown from doc, it finally hit home for us both this is indeed the final countdown! 5-7 days of chemo with Kaiser, a couple weeks at home with a few blood transfusions thrown in for good measure, then on June 22 it is off to Stanford for another bone marrow draw, chemotherapy and finally the big day! July 2nd, is bone marrow transplant day! Many more trips to the hospital, days with allergic reactions, blood loss, crazy cell counts, weakness, weight loss, hair loss, hives, nausea, weakness and anxiety have all led to this final countdown of healing and redemption!!

Becoming cured from this dreadful disease is going to be an ongoing uphill climb! 4 months of separation from the ones she loves, four months of crazy stuff that is going to happen to her both mentally and physically!  Through all of this there is one thing I know for sure; if anybody can beat this horrible disease it is my stubborn, gritty, ornery beautiful wife!

So please say a prayer, hold a kind thought, it is definitely going to be a long screwy, jigsaw puzzle of a summer and we could all use the good mojo you can muster to get us through!!

more to come…..

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We have a match!!

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Time is fleeting and days roll by like road signs on a freeway. Moments consisting of only a glimpse, a stare, are gone as fast as they arrived.

We are counting down days as this weekend rapidly approaches. Tuesday Jacy readmits herself for another round of chemotherapy. 5-7 days hospital bound. So this weekend is all about family. Cody is home and all of the kids have been pestering him, hoping for one on one time with their older brother. To Cody’s credit he has taken the time, spending it carefully with each one of them, letting them do what they want to do and fostering a fun, over the top attitude. We are proud of this boy, he went off to college and came back just a tad bit grown up and is becoming one heck of a man.

Counting and counting, days, hours, minutes and seconds. One more day till chemo, many more days till total sickness, and a few more days until blood transfusions; then just as you start to feel like yourself again, hives! Or headaches, or difficulty breathing, or the inability to stay awake because you need Benadryl for the hives, or blood transfusion or because you just need to sleep.

Once all of these medical cocktail concoctions are hammered out, it is time to throw in a Bone Marrow Transplant. Speaking of a Bone Marrow transplant, we learned on Thursday of this week a match had been located, identified, notified and accepted! Not just any match mind you either, this match was a 10 out of 10!!! Pretty super great news! Some really awesome person took the time to get swabbed and now will inevitably change the course of both their life and my wife’s forever! Thanks to this angel, Jacy now has the best recovery chances yet! In case you were wondering or asking yourself right now; what does ten out of ten really mean? 10/10 is part of HLA matching for a suitable donor and here is everything you need to know about matching and the importance of that donor via my favorite web site: Be The Match!

HLA MATCHING

Human leukocyte antigen (HLA) typing is used to match you with a donor for your bone marrow or cord blood transplant. This is not the same as ABO blood typing. HLA is a protein – or marker – found on most cells in your body. Your immune system uses HLA markers to know which cells belong in your body and which do not.

Be The Match Registry® is a listing of potential donors and cord blood units and their HLA types. The best transplant outcome happens when a patient’s HLA and the donor’s HLA closely match.

HLA matching basics

Half of your HLA markers are inherited from your mother and half from your father. Each brother and sister has a 25%, or 1 in 4, chance of matching you, if you have the same mother and father. It is highly unlikely that other family members will match you. Under very rare circumstances, family members other than siblings may be tested.

About 70%, or 7 out of 10, patients who need a transplant do not have a suitable donor in their family. If you do not have a donor in your family, your transplant team may look for an unrelated donor or cord blood unit for you on Be The Match Registry. When a search is done on the Be The Match Registry, it includes a search of more than 22.5 million potential adult donors and more than 601,000 cord blood units on lists from around the world.

Role of HLA matching

HLA matching is important because a close HLA match:

  • Increases the likelihood of a successful transplant.
  • Improves engraftment—when the donated cells start to grow and make new blood cells in you.
  • Reduces the risk of complications after transplant, especially graft-versus-host disease (GVHD). GVHD is a potentially serious complication. GVHD occurs when the immune cells, which are part of the donated marrow or cord blood, attack your body.

HLA matching requirements

There are many HLA markers. Each HLA marker has a name. The names are letters or combinations of letters and numbers. Doctors review at least 8 HLA markers for these minimum requirements: two A markers, two B markers, two C markers, and two DRB1 markers. Some doctors look for an additional marker, called DQ, to match.

An adult donor must match at least 6 of these 8 HLA markers. Many transplant centers require at least a 7 of 8 match. Because cord blood cells are less mature than adult donor cells they have less strict matching criteria. A cord blood unit must match at least 4 of 6 markers at HLA-A, -B, and -DRB1. These guidelines are based on scientific studies of transplant results.

Example A shows that the patient’s markers match the donor’s. When HLA markers A, B, C, and DRB1 from the patient and the donor match, it is called an 8 of 8 match. When A, B, C, DRB1, and DQ markers all match, it’s called a 10 of 10 match.

Example B shows that one of the patient’s A markers does not match one of the donor’s A markers. Therefore, this is a 7 of 8 match or, if the DQ marker matches, a 9 of 10 match.

Confirmatory HLA Typing

HLA typing is a complex process that can be done at different levels of detail. Patients always have HLA typing done at a high level of detail. Blood is tested using laboratory methods that check the exact HLA markers.

Every potential donor has a special type of detailed HLA typing (also called confirmatory typing) done before being chosen as the best match for a patient. Confirmatory typing is done to make sure the patient and potential donor match at a detailed level.

 

 

Other factors for a successful transplant

HLA matching is the most important factor but not the only factor that can affect your chances of having a successful transplant.

  • The number of blood-forming cells needs to be suitable for the size of the patient. Larger patients need more blood-forming cells. Cord blood units have fewer cells than adult donors. Sometimes, more than one cord blood unit is needed for a patient.
  • Different donor characteristics have an impact on a transplant’s success. These include the donor’s:
    • Age
    • Gender
    • Blood type
    • Body size
    • The number of times a female donor has been pregnant

If more than one well-matched adult donor is found for you, your doctor will look at these factors.

  • Infection history can also affect transplant outcomes and choice of a donor. Before transplant, doctors test patients and donors for a common virus called cytomegalovirus (CMV).

Finding donors for patients with less common HLA types

Transplant centers may face a greater challenge finding a match for some patients because some HLA types are less common. HLA types are inherited, so the best chance of finding a suitable donor may be with someone of a similar racial or ethnic background. Some people have very diverse tissue types that reduce the chances of finding suitably matching donors.

You can see how a “10 out of 10” match is pretty darn great!!! We also learned the tentative date for her transplant is scheduled for the 22nd of June. Then things get turned a little further upside down here on the ranch. We as a family had a long talk about everyone’s responsibilities while mom was away this summer. Three months is an eternity in a child’s mind and that time frame really hit Parker hard. Through a few tears and a lot of hugs he came to realize the importance of mom’s latest adventure, and even though he didn’t like the idea, he agreed to be the best strongest little dude he could be. I cannot imagine being a young guy trying to process all this information in conjunction with your mom declaring she will be absent for the entire summer.

Other than one small emotional blip, everything else seems to be coming together just fine. We all know our roles, and Jacy know hers is to do nothing more than heal, get better and come home to her family.

Only time will tell what our summer brings..

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Another crazy week

theycallmebetty1 Comment

A week gone bye.

What’s in a week? 7 days, Mon-Sun, 5 days dedicated to the working machine, school, children, and so on. This last week has been one hell of a ride let me tell you! Starting the Friday before last Jake and I packed the rig with gear and horses; pointed east we headed off for the last CHSRA D-3 rodeo of the year! Jake was looking to score at steer wrestling and maintain a second place standing in cutting. His team roping partner Breanne and he were hoping to finish the year without another goofy mishap!

Saturday and Sunday went by in the blink of an eye. When it was over, no steers hit the ground, Jake slipped from second to fourth in cutting and he and his team roping partner finished the year the way they started, laughing at each other’s crazy luck. Now it seems as though the weekend could be interpreted as a bummer, but nothing could be further from the truth! All the kids had a great time, points were tallied and when the dust settled Jake made state finals in Steer Wrestling, Cutting and earned the Rookie of the year All Around Cowboy award! To say he was excited would be an understatement! He put on a tough face, but smiled his boyish smile all the way home.

Speaking of home, the wife had enough strength to take our daughter to her softball game on Saturday. This of course left her drained on Sunday, but it was a great outing as she finally was able to see and converse with people wondering about her condition and how she was doing overall.

Monday arrived leaving us scrambling once again as fair time was upon us. Being a ranch family all three kids had entries in the fair. Jake-a lamb, and a welding project, Jessica-a pig, Parker-two pairs of meat chickens! Washing, trimming, cleaning tack, moving equipment and working horses were all part of a very long or short depending on how you perceived it, day.

Tuesday, we moved all the animals onto the fairgrounds an so began a long week of 6am to 8pm days. Feeding, fitting, showing, and generally watching our children have the time of their lives! Nothing beats fair time when you are a child. I remember quite well how I looked forward to fair week, showing my lambs and hanging with all my friends from around the county. It’s a time of freedom, competition, hard work and all the corn dogs you can shove into your gullet! If you are lucky at the end of the week your animal sells at auction, leaving you with a budget for next year’s project.

Jacy couldn’t attend the fair as our fear of contamination from an unknown source lingered like a dark cloud. It was hard for her to stay home, not able to participate in her children’s adventures during the week. I tried my best to send her pictures and keep her updated, as did every other person with a camera from our loving little town. She had planned on attending show day with a HEPA mask, but other people from medical places had different plans for my wife unbeknownst to her. So pictures continued arriving via text from many of the moms wanting to ensure house ridden Jacy wasn’t missing a moment with her children. Small towns are a blessing.

Now if being stuck at home for this week wasn’t enough; Jacy’s doctor called to say her results from the last marrow draw we good. Residual Leukemia remained in small numbers so the best course of action was to move up the hysterectomy by a week!! Wait? A week? Yep you guessed it? That placed the surgery day smack dab on top of show day at the fair! The “other people” had spoken! Dream killers! So with a phone call, Jacy’s mom took the day off work, dropping everything to ensure her daughter was taken care of and her grandchildren had their father by their side on show day! I love my mother in law. Not many guys can say that I think. But I do. I think she is a pretty cool, whacky, funny lady who would do anything for her children.

So that brings me to the real gist of my reflection. The hysterectomy.

Hysterectomy is the surgical removal of the uterus. It may also involve removal of the cervix, ovaries, fallopian tubes and other surrounding structures.

Usually performed by a gynecologist, hysterectomy may be total (removing the body, fundus, and cervix of the uterus; often called “complete”) or partial (removal of the uterine body while leaving the cervix intact; also called “supracervical”). It is the most commonly performed gynecological surgical procedure. In 2003, over 600,000 hysterectomies were performed in the United States alone, of which over 90% were performed for benign conditions.[1] Such rates being highest in the industrialized world has led to the major controversy that hysterectomies are being largely performed for unwarranted and unnecessary reasons.[2]

Removal of the uterus renders the patient unable to bear children (as does removal of ovaries and fallopian tubes) and has surgical risks as well as long-term effects, so the surgery is normally recommended when other treatment options are not available or have failed. It is expected that the frequency of hysterectomies for non-malignant indications will fall as there are good alternatives in many cases.[3]

Oophorectomy (removal of ovaries) is frequently done together with hysterectomy to decrease the risk of ovarian cancer. However, recent studies have shown that prophylactic oophorectomy without an urgent medical indication decreases a woman’s long-term survival rates substantially and has other serious adverse effects.[4] This effect is not limited to pre-menopausal women; even women who have already entered menopause were shown to have experienced a decrease in long-term survivability post-oophorectomy ~ Wikipedia

That’s right, in the middle of all we as a family had going on this particular week, combined with the fact my wife was just starting to feel better, a hyterectomy was thrown into the mix! Why? Because she cannot have the Bone Marrow Transplant without it! Why? Because she has Polycystic Ovary Syndrome!

I know right? So what is Polycystic Overian Sysndrome?

Polycystic ovary syndrome (PCOS), also called hyperandrogenic anovulation (HA),[1] or Stein–Leventhal syndrome,[2] is a set of symptoms due to a hormone imbalance in women.[3] Symptoms include: irregular or no menstrual periods, heavy periods, excess body and facial hair, acne, pelvic pain, trouble getting pregnant, and patches of thick, darker, velvety skin.[4] Associated conditions include: type 2 diabetes, obesity, obstructive sleep apnea, heart disease, mood disorders, and endometrial cancer.[3]

PCOS is due to a combination of genetic and environmental factors.[5] Risk factors include obesity, not enough physical exercise, and a family history of someone with the condition.[6] Diagnosis is based on two of the following three findings: no ovulation, high androgen levels, and ovarian cysts.[3] Cysts may be detectable by ultrasound. Other conditions that produce similar symptoms include adrenal hyperplasia, hypothyroidism, and hyperprolactinemia.[7]

PCOS has no cure.[8] Treatment may involve lifestyle changes such as weight loss and exercise. Birth control pills may help with improving the regularity of periods, excess hair, and acne. Metformin and anti-androgens may also help. Other typical acne treatments and hair removal techniques may be used.[9] Efforts to improve fertility include weight loss, clomiphene, or metformin. In vitro fertilization is used by some in whom other measures are not effective.[10]

PCOS is the most common endocrine disorder among women between the ages of 18 and 44.[11] It affects approximately 5% to 10% of this age group.[6] It is one of the leading causes of poor fertility.[3] The earliest known description of what is now recognized as PCOS date from 1721 in Italy.[12]

When you have a bone marrow transplant in conjunction with heavy doses of chemotherapy the whole “heavy nonstop menstrual cycle” has life threatening consequences. So no argument to be had, out with that Uterus! Buh bye!

Now this particular operation seems simple enough, it is an outpatient procedure after all. Go in at 2pm be out and home by 8! Whoo hoo, like going out for dinner, only there is no food, no wine, no husband and only 6-8 of your not so closest friends turning your guts into a Jacy frappe!

8 pm became 2am when she arrived home it was obvious she was dealing with incredible pain. After helping her upstairs, getting her settled into bed, I knew it was going to be a rough night for us both. She slept most of the next day as the children and I ran back and forth from the fairgrounds. But with her mom at her side she was well cared for. Day two led to a Pit Viper like attitude due to swelling, pain and a resurgence of hives covering her body or more specifically the incision sight. Day three brought a few smiles and a lighter attitude. Today the swelling remains, her body aches and the hives just refuse to subside.

So we continue to take each moment one day at a time. It sounds as though once healed up from this latest procedure she will head back to the hospital for five more days of chemotherapy in preparation for the bone marrow transplant which should take place sometime in June.

That was our week, glad I could bring everyone up to speed. Just another notch on the old day to day, week to week, month to month belt. Our spirits are still high as we march forward towards complete remission.

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And now to the anchor desk for an update!

theycallmebetty5 Comments

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Wednesday morning we arrived inside Kaiser Vallejo room H22 at 0600. Jacy signed herself in and before long an elderly volunteer attendant called our name. She was in her 70’s and struggled a bit to stay on task. Her manner was direct as there was an apparent agenda to follow judging by the clipboard she maintained a death grip upon. It was obvious with her demeanor we were one of her first for the day but definitely wouldn’t be her last. I tried my hardest taking her seriously but every time we made eye contact I swear her wig moved a tad off kilter from one side to the next. She was sweet, a bit confused at times, but doing the very best job she could. I pictured her as a young military nurse either late in WW2 or during the Korean War. She just had that way about her. It was definitely a pleasure meeting her.

She scooped Jacy up and the two scurried away towards a prep room, her finger pointed my direction ordering me politely to sit and stay inside the waiting room. There was a large television inside the waiting room showing a row of numbers on the screens left side with colored bars running towards the right. These numbers were very reminiscent of college I.D. numbers used for testing purposes. Each number was assigned to a patient. A color bar associated with each number identifies which stage of treatment your loved one (patient) currently resides. It was a nice little system, allowing family members to know exactly what’s happening without constantly barraging the attendants for answers.

The old dame came back into the waiting room after around fifteen minutes, staring at her clipboard while trying her best to pronounce my last name. (Good luck right?) Reaching my feet she wanted confirmation that I was in fact Jacy’s husband? My first instinct was to remind her we had in fact talked not more than fifteen minutes ago and at no time during those fifteen minutes had I rushed out, found an attorney, judge and open courtroom to obtain a legal divorce! Anyways my mother taught me better, so politely I smiled and nodded yes! Yes I was still Jacy’s husband. Her retort was: phew! I almost had you confused with that gentleman over there who is wearing a shirt similar to yours. Watching her wipe her brow and shake a little more it was then I decided I loved her, she was perfect and nothing could possibly go wrong today! She motioned for me to follow her. She walked quickly and with purpose down a long hallway, explaining hospital rules for visiting; where I should sit, what I should say, while pointing out every door, corner and hallway, so when the time came I could find my way back. I bit my tongue for I didn’t want her to see me chuckling as she was quite serious and still cute as a button!

Moving into the prep room area which consisted of a long rectangular room housing multiple cubicle style, curtain separated mini rooms, lining the walls all the way around its corridor. A bed was placed inside each cubicle complete with computer, I.V. stands, oxygen, Sp02/heart monitor and so on. Jacy laid upon a bed, I.V. in place, one piece backless gown, the fashion rave of all hospitals, securely affixed and a hair net. It was quite odd a woman who holds not one scrap of hair to her body needed a hair net? But I suppose rules are rules.

Jacy smiled, I sat beside her and listened as her anesthesiologist went over procedures, how she would feel, along with what to expect. He was a curt German man with a fairly strong German accent. Now every German I have ever met has an incredible dry sense of humor (which I LOVE) and after a few moments of my wife and I winking at each other while dropping one liners his direction, he proved to be no different. He was witty, charming and an very interesting man to talk with. I was sad we didn’t get to spend more time with him.

Dr. Truong arrived, all smiles as always. She is hands down the coolest doctor I have ever had the pleasure of knowing. I cannot believe how above and beyond I feel she has gone with my wife. They have created an actual friendship outside of the doctor/patient relationship. Of course once you meet my wife it is very hard not to become her friend. We chatted about the marrow draw, how long it would take under sedation and she reaffirmed how sorry she was Mondays draw couldn’t be completed back in her office. It was understandable, Jacy just could not take any more pain, and with 6 prior draws from the same site, number 7 just wasn’t going to happen. We all kept talking as supplies were gathered and everyone laughed at a few self-deprecating jokes targeting us both. We laughed and told stories about our families and when the doctor gave her a dose of Versed which he explained allows the patient to forget the surgical experience; I looked him in the eye reiterating the whole she’ll forget everything portion to which he looked confused and stated; yes she will forget. Not wasting any time I grabbed Jacys hand announcing loudly there was something I needed to tell her! (Pause for effect)  Everyone started cracking up and Jacy nodded off to sleep with a smile on her face!

40 minutes later Dr. Truong found me to report everything went as planned. She gave me a giant hug and asked how I was doing? I said fine, she smiled and we talked about what the future held for our girl. Basically it comes down to this marrow draw and the panel being tested. If Leukemia has resurfaced, off to chemotherapy we go. If little to no Leukemia is present, then off to receive a hysterectomy, followed with a few weeks rest and then? ANOTHER ROUND OF CHEMO!!!!! YAYYYYYY! Dr.Truong says Jacy is the perfect candidate! She is young, strong, and has handled chemotherapy better than most patients. Jacy also has a type of Leukemia which is chronic so the transplant is a must. There are some interesting markers hidden within her Leukemia cells or blasts that could be cause for concern, but doc thinks they are very manageable and if they become unmanageable there are some new experimental drugs with great success rates! So all things look great!

Once the final round of chemo is finished, we set the date and prepare for Stanford and a Bone Marrow transplant! Best case scenario we are looking to be in Stanford around the middle to end of June!

So keep the prayers coming! We feel them, Jacy definitely feels them. We are continually grateful to all who are following us in this journey, holding us and our family up in prayer.

God bless you all..

Today just sucked…

theycallmebetty1 Comment

Watching someone you love in pain, brings no greater torment within the soul.

There are times in life when feeling absolutely powerless is a step up from the darkened depths your heart is traveling. Seeing my wife emerge from the doctor’s office today, I expected a curt; fuck that hurt! (yeah every now and again the surly farm girl comes out) Or I am so tired of these gosh darn biopsy’s! Then we grumble a little about her elderly shuffle, a result of having someone gnaw on her hip bone with a needle and make our way slowly to the car.

But today, today was a knife to the heart! She emerged, spoke my name and instantly I knew something was wrong. Her voice cracking, lip quivering, and then tears. Tears streaming down her face as she informed me her biopsy couldn’t be completed because of severe pain.  After several if not close to a dozen or so biopsy’s, I am pretty sure her pelvic bone is done with this shit! Having taken the appropriate pre-meds prior to our arrival, then a dose or two of lidocaine, followed up with a few more doses of lidocaine, followed up with the maximum amount of lidocaine prescribed for a woman her size.  It became very clear to her and her doctor this just wasn’t going to happen.

It also was an awakening in that Jacy’s body’s had enough for the time being. Not good timing as her biggest fear for the moment centers on the Leukemia’s progression. We need to know what her cell counts are to create a plan of action.  Putting off another few days until a different course can be plotted only exasperates her anxiety.  The despair in her voice, the emotion on her face combined with an inability to do anything (something I am not good at handling) and my heart was breaking for the woman I love.

Walking slowly to the car; all I could think about was my love for her and wishing it was me, not her. Helping her into our car, my chest was hurting, she cried, took a deep breath then cried some more.  It was a quiet, somber ride home. Helping her upstairs she gently laid upon our bed and quietly slept.  Beat up, bruised but resting peacefully.

The appointment will be rescheduled so Jacy can be sedated through an I.V. to complete this procedure. It will still suck but at least she will be knocked out. Hopefully all this will happen later this week.

Today was just one of those days you close your eyes, say a little prayer to calm the nerves and rely on faith.

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A fork in the road..

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Fighting Leukemia is filled with many turns and twists. Today is one of those days. This morning Jacy and I are headed to Kaiser for? Wait for it??  Another bone marrow biopsy!

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We have lost track as to how many biopsy’s she’s had up to this point. But rest assured it has been enough times I am pretty sure there is a permanant point in her back marked “Pin Cushion”. Now if you have never had a bone marrow biopsy, you really dont know what you are missing when it comes to this little treat! So let me give you a little break down! Tale of the tape as it were….

A bone marrow biopsy and aspiration can be done in a hospital, clinic or doctor’s office.

The procedures are usually done by a doctor who specializes in blood disorders (hematologist) or cancer (oncologist).

The bone marrow exam typically takes about 10 minutes. Extra time is needed for preparation and post-procedure care, especially if you receive intravenous (IV) sedation. The total time for the procedure is about 30 minutes.

Before the procedure

Your blood pressure and heart rate will be checked, and you’ll be given some form of anesthesia to keep you comfortable.

Most people need only local anesthesia, as bone marrow aspiration, in particular, can cause brief, but sharp, pain. You’ll be fully awake during the procedure, but the aspiration and biopsy site will be numbed to reduce pain.

If you feel anxious about pain, you may be given an IV medication so that you’re either completely or partially sedated during the bone marrow exam.

The area where the doctor will insert the biopsy needle is marked and cleaned. The bone marrow fluid (aspirate) and tissue sample (biopsy) are usually collected from the top ridge of the back of a hipbone (posterior iliac crest). Sometimes, the front of the hip may be used.

Bone marrow aspiration — but not biopsy — is occasionally collected from the breastbone or, in children under the age of 12 to 18 months, from the lower leg bone.

You’ll be asked to lie on your abdomen or side, and your body will be draped with cloth so that only the exam site is showing.

Bone marrow aspiration

The bone marrow aspiration is usually done first. The doctor makes a small incision, then inserts a hollow needle through the bone and into the bone marrow.

Using a syringe attached to the needle, the doctor withdraws a sample of the liquid portion of the bone marrow. You may feel a brief sharp pain or stinging. The aspiration takes only a few minutes. Several samples may be taken.

The health care team checks the sample to make sure it’s adequate. Rarely, fluid can’t be withdrawn and the needle is moved for another attempt.

Bone marrow biopsy

Your doctor uses a larger needle to withdraw a sample of solid bone marrow tissue. The biopsy needle is specially designed to collect a core (cylindrical sample) of bone marrow.

After the procedure

Pressure will be applied to the area where the needle was inserted to stop the bleeding. Then a bandage will be placed on the site.

If you had local anesthesia, you’ll be asked to lie on your back for 10 to 15 minutes and apply pressure to the biopsy site. You can then leave and go about your day, returning to normal activity as soon as you feel up to it.

If you had IV sedation, you’ll be taken to a recovery area. Plan to have someone drive you home, and take it easy for 24 hours.

You may feel some tenderness for a week or more after your bone marrow exam. Ask your doctor about taking a pain reliever, such as acetaminophen (Tylenol, others). ~Mayo Clinic

Sounds like fun huh? Dont let all that sugar coating fool you! It hurts! It hurts real bad! I mean I dont know personally, but from what I have witnessed given the choice of a shank to the gut or a bone marrow biopsy well lets just say Orange is the new Black! Unfortunatley bone marrow biopsy’s are a necessisty when determining our next course of action. We are hoping for encourging results so Jacy may take that next step in the process with a minor surgical procedure needed prior to her next round of chemotherapy; thusly leading us back to the steps of Stanford hospital and a bone marrow transplant.

If the numbers from the bone marrow biopsy are not encouraging then it is off to Chemotherapy land anyways. Then her doctors will push the transplant a little further down the road. This of course would not be the optimal postion for recovery.

So give us a few good thoughts and prayers as the biopsy is never pleasant. We will drive over, telling bad jokes, talking about the future and anything else that removes fear of this upcoming procedure from our thoughts.

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Each day is a gift…

theycallmebetty4 Comments

Every day we travel through a world filled with the unknown. Our existence centered on being over here at a certain time, over there later in the day, a meeting with friends, or hustling constantly checking our electronic organizers. Our lives intertwined within the movements of a clock or the expectations of others.

How many times have we sat down at the end of an evening to utter these words; where did the day go? How many days in a row before we recognize the week is over and we mumble the exact same sentiment; where did the week go? The insanity of it can be mind-boggling as we continue placing an emphasis on agendas. Lost is the importance of our life, what it means to us in conjunction with the gift of having another day. Forgetting about finding a moment during each one of those days that resonates, becomes a memory or a topic for conversation. Real conversation too, not a text or Facebook posting.

George Strait has a song that always helps me slow down and remember that each day is a gift.

Just walked down the street to the coffee shop

Had to take a break

I’ve been by her side 18 hours straight

Saw a flower growing in the middle of the sidewalk, pushing up through the concrete

Like it was planted right there for me to see

The flashing lights, the honking horns

All seems to fade away, but in the shadow of the hospital at 5:08

I saw God today..

I’ve been to church, I’ve read the book, I know he’s here but I don’t look, near as often as I should

His fingerprints are everywhere, I just look down and stop and stare,

Open my eyes and then I swear,

I saw God today…..

And so it goes.

With everything happening in our life, it can become easy to be angry. Today I had a wonderful conversation with a friend about all that is happening in my life. I wonder why I am not angry. It is easy to just say you are not angry when you really should be; placing the classic stoic face on this bump in the road instead. But I just can’t find any anger inside to dwell upon. God has given me so much, God has given us, my wife and family so very much. In a life where blame is the first bony finger pointed out of malice. Who would I blame? Who could I blame? Why would I waste the time and energy? It is what it is, even if that “is” sucks!

There is a plan for all of us. Whether you believe in a God, no God, a higher power or some form of spiritual awakening. There is a plan. I have always believed our lives have some purpose, some meaning and it is up to us to find what that meaning is. We can travel through life as I explained above, with blinders on and no recollection of any real purpose or need, never finding or fulfilling moments of remembrance and that is fine, if that is all you want out of life. To bad really, since you only get one shot at it. But for me, I know through hard work, an even temper, leaving my eyes wide open to all possibilities the plan will reveal itself. Being angry at the cards dealt does no one any good. Play those cards instead and believe victory is yours.

So we move forward with a positive attitude. All will be fine, we will rise above and walk away from this emotional roller coaster ride with our heads held high. We will hold hands through old age, cherishing our children, our grandchildren and laugh. Laugh at all the memories, laugh at all the little moments, laugh at beating the odds, beating so much sorrow that can arise from these situations, laugh and thank God for all that we continue to have placed before us..

Today I …

Saw a horse nuzzling a newborn foal

Saw my children laughing at nothing, and everything all at once

Watched as my son rode through a practice really well

Stared at my mare grazing in a pasture of green surrounded by other mares ready to foal just as she is ready to foal. The miracle of birth waiting to arrive.

Rode one of my favorite horses and it brought peace and contentment to a tired soul

Visited with friends celebrating a birthday, laughing, joking and having a really good time

Watched my son’s friend look like he wanted to ride a horse, while being too shy to ask

Talked with my daughter after her game of softball, listening to her tell me about it filled my heart with joy.

Played Legos with my youngest, creating cars to battle an imagery foe.

Hugged my wife, kissed her beautiful bald head and melted as she smiled at me

Feel blessed for everything I have.

Sitting here staring at my computer, looking at the mountain range behind my house I know;

I saw God today.

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A little stronger one day at a time.

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It has been a pleasant last few days.

Jacy is feeling a bit better, although she tires easily and can’t seem to get enough sleep. Jacy has been strong enough to venture out and watch her daughter play softball, take a trip to the store on her own and even drive herself to the doctors on a few occasions. Her cell counts continue to rise and everything looks to be on track for the next phase. It is nice to see my wife with color in her skin and a smile on her face.

Monday we have another bone marrow draw, determining which direction she will go in regards to further treatment. Hysterectomy or another round of chemotherapy, hence another 7-10 days in the hospital. This whole process is slow and steady. We all know slow and steady wins the race so all fingers are crossed.

Many people have come by the house, checking on our family’s wellbeing, while hoping to catch a glimpse of my wife. It still leaves me speechless as to the outpouring of love and compassion shown our family. We are truly blessed and the spirit of goodwill will indeed be paid forward.

Someone asked me the other day why I write so openly and freely about what is happening with our family. This person couldn’t understand how sharing all the private details was beneficial to anyone; that it would embarrass this person to have people, even strangers know everything so intimate about their life. I assured this person I don’t write about everything that is happening as some portions need privacy while other portions are either to disturbing for discussion or provide quite a visual picture. I choose discussing the emotional toll as opposed to citing visual references. For everyone can relate to emotions associated with the human condition when referencing such an event.

Writing has also allowed me to answer everyone’s questions in one simple forum. Instead of answering a hundred phone calls or numerous texts, blogging has given us the freedom to let all we know what is happening and when. It is like a virtual bulletin board for all to see and interact.

Through this process I have found a voice, for you see when you look up Leukemia, its symptoms, research, web pages and blogs, everything revolves around knowledge, diagnosis and the patient. Not many pages dedicated to the family leukemia effects. We have a say, we the family have emotions, fears, questions and nightmares. Yet we are not anywhere near the circle of trust when it comes to answers. When writing my very first page back in 2013, I wrote out of fear. Like a new probationary firefighter walking into his assigned station for the first time, I had a million questions, a huge responsibility, a fear of the unknown and the knowledge that no matter what, I needed to prove myself worthy. Someone depended on me!

In 2014 we survived three chemotherapy sessions, numerous hospital runs, countless emergency room visits, and many long nights holding her hand as all seemed hopeless. Temperatures, allergic reactions, swelling in places you never thought could swell to such an extreme, hives, night sweats, day sweats, the inability to stay awake, the inability to fall asleep, stomach issues, skin issues and so on. Living through sorrow filled moments and walking amongst the clouds as her doctor told us she was in remission.

2015 has brought us right back to square one. Hearing those dreaded words; it (leukemia) is back.

So as I said; I have found a voice. But I have decided it is not a voice for myself, but for anyone else who finds themselves holding their Leukemia ridden significant other or family members hand in the middle of the night. For that person of support who finds themselves alone, the only one standing between the people they love and utter emotional chaos! When faced with so much responsibility, endless reams of information, knowing you need to be strong but don’t know how. I hope and pray that person sees my blog and has the courage to ask me for help. This is a community, Leukemia has a community and even though we don’t carry this cancer we should be doing our best to support one another, so we may be stronger when it comes to supporting those who do carry this cancer! It is just the way I feel.

In my last blog post a woman left me a comment about her 39-year-old husband who’d just been informed he has Leukemia. They have children and her note felt fearful. I hope with all my heart she received my reply. Letting her know I would be here if she needed help. That is what this is all about. Building a bridge of support for all of us “support systems”.

As always I love all of you who continue to show us love and support.

More to come…..

There is light..

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Home…

Home is where the heart is.. Piny the elder

Love begins by taking care of the closest ones, the ones at home.. Mother Teresa

The ache for home lives in all of us, the safe place where we can go as we are and not be questioned… Maya Angelou

Imagine if you will, life has thrown you a curve, well ok, more like life has thrown you a curve and you forgot not only your uniform, ball cap, mitt, cleats and cup but you weren’t even looking in the general direction as this curve, this speeding 90 miles an hour curve ball hits you square in the head! (Sorry I love baseball, my blog, my analogy)

Now just as you get up, dust yourself off in preparation for righting this horrific wrong, this lack of observation on the field; coach comes out and says your contracts been cancelled. You no longer have a home. Years of familiarity, friendships, camaraderie, and your family (the team) gone with a simple decision. All done while following well written rules allowing others to decide your future.

That is how it seemed yesterday when we began discussing care for Jacy.  You see, after a bone marrow or Allogenic Transplant, there is five or so days still confined to a hospital room but as soon as your white cells begin to act appropriately you are released for out-patient care.  No big deal right? Wrong..

We live over two hours away and learned that all patients must live within a one hour maximum radius to ensure rapid response from the appropriate physicians should a dire medical emergency arise. Also there would be numerous doctors appointments that could only be held at Stanford.  So with high traffic flows and population density this limited our choices for a recovery lair. Stanford has housing available near campus, but we had been warned those are hardest of all domiciles to acquire.  Our next best location for Stanford provided housing was in and around the San Jose area.  Although tempting, something didn’t feel right in my wife’s heart about abandoning her family and San Jose just seemed so far away from Stanford and home. If you need to be confined unwillingly then right next to campus seemed the most prudent course of action.

Either way three months away from home, away from her children and farm. None of it felt right and it was eating her alive.  As we listened to contractual stipulations ensuring all healthcare recipients were in full understanding of terms and agreements, it felt so wrong to have such a momentous life shift bring further pain through separation.

All the way home she felt as though her life was being ripped away.  She couldn’t grasp the reality of having to live so far away.  No matter where she ended up for those three months her sister would be with her as she needed 24 hour care.  But just the premise of her children being so far away while she stayed in a foreign place with surroundings unfamiliar was eating her alive.

It was bothering me as well.  Although I fully understood the reasoning’s behind these decisions we had no control over, I just wanted to make things easier. Not just for her, but for our children.

And then yesterday it hit me, her dads house. He has an apartment off the main house that could be kept clean, her sister would then still be home, her family would be surrounding her, and we could come visit in a place familiar to our children. A place where they could see their mom, love on their mom and then go off to play with cousins. A place where her rehab was surrounded by peaceful redwoods and stunning views of the silicon valley!  It was the perfect set-up! After talking about it with her family everyone was on board!!! Our only glitch! In the paperwork defining areas of acceptance, the Saratoga mountain range was excluded.  A case may have to be fought and fought hard I pondered! For you see travel time from her dads house to Stanford is 35 minutes, there is minimal traffic from the route we take and that alone makes it closer than San Jose!

Every family members fingers remained crossed as Jacy called the social worker today in hopes of pleading a case.  A case built around what her entire family felt was best for the patient, their sister, daughter, mother and wife. Total family care, a place that is like a second home, and peace of mind for all involved.  Cant we please overlook the Saratoga mountain range clause? PLEASE?????

The answer; YES!!!!!

That is right our first ray of light through this medical tunnel of darkness! No argument, no pandering, just a good old-fashioned yes! Of course this after the social worker mapped it ensuring all was above-board! We heard Yes!!! I almost leapt from my seat upon hearing the news! She was ecstatic, I was relieved, her fathers fears eased and an entire family able to give this woman we love all the support she needs!

Our first hurdle down and it was a psychologically big one!

Tomorrow brings another day and something, anything to look forward too.