5 years
1825 days
43830 hours
2629800 minutes
157788000 seconds
Do you have one of those days that you can point to and say, “That is when it all changed. That day changed my life forever.”
Mine was May 28, 2010. Five years ago I was told my dad had Multiple Myeloma. Five years ago I was told my dad was in kidney failure and would need dialysis 3+ times a week. Five years ago I was told my dad had a broken back and fractures in his skull, hip, and leg bones. Five years ago I was told by both doctors and nurses that they were shocked my dad was still alive.
Within those five years, I have seen my dad through 1 diagnosis, about 10 bone morrow biopsies, 2 bone morrow transplants, 3 dialysis treatments, 2 hospital stays due to colds, 1 gangrene gall bladder, about 10 radiation treatments, and more chemotherapy treatments than I could ever begin to count.
Yes, those five years have been the hardest years I’ve ever had to live through. But they also gave me something back in return. They have shown me to be grateful in the smallest moments of life. They have created memories that I will have forever. They have seen a lot of tears, but they have seen just as much laughter too. They have given me time that I might not have had otherwise.
The Story
The Beginning:
May 28, 2010
The Background:
In December of 2009, my dad graduated from nursing school. Throughout school, he kept saying he wanted to work in the OR, ER, or critical care unit. He enjoyed the blood and guts of the operating room, but once he graduated he didn't go out looking for a job. Mom and I became concerned and we later learned that he wanted to work on his nursing skills before he chose a specialty. In March of 2010 he finally went to the hospital and he was offered a job on the spot, which they never do.
Problems:
Everything started off great. Dad had awesome mentors and he enjoyed the work. But after a few weeks he started to get pain in his legs and back. We figured it was from working 14 hour nights, standing on his feet, lifting people, etc. Dad would work 3-4 days and then have the rest of the week off, but the pain got so bad that dad wouldn't leave his bed unless it was a day he worked. After his 8th week of orientation mom told him he couldn't go back to work until he went to the doctor. We knew something was wrong and we knew he needed to be looked at.
On May 27, 2010 dad finally went to see our regular family doctor. I wasn’t in town for this, but was told that dad couldn't hold up his own leg. The doctor knew something was up so he did some blood work and scheduled an MRI for June. 3 hours later mom got a phone call from the doctor's office saying my dad was in acute kidney failure and had to get to the hospital right away. So they packed up and headed to the hospital not knowing the worst was still to come.
During this time I was in Kansas City, where I went to school. I was planning on staying there for the summer with the hope of getting a job. When I heard my dad was in the hospital I decided to drive home the next morning. My dad was never a person who got sick and had never had a hospital stay except when he got his wisdom teeth pulled when he was a kid.
That Morning:
May 28, 2010.
I remember it was a Friday and I woke up kind of early. I had an allergy flair up the day before and was feeling pretty miserable and just wanted to go home and be with my family. The entire hour ride home I played different scenarios in my head. If this happens I’ll move back home. Maybe I’ll just move home for the summer and move back to KC when the fall semester starts again. If this happens I’ll just stay home for a week or two and then go back to KC, the list kept on…By the end of my ride, I felt pretty confident that the outcome would be ok because that’s how it always is. The next thing I knew I was arriving at the hospital. But as I pulled into the parking lot I got this horrible sickening feeling in my stomach. Something was wrong and my mom wasn't telling me everything. I even told her that as I picked her up from the parking lot to go run a few errands she wanted to do. She didn't say anything to my comment and it was soon forgotten as we went about our normal chit chat.
At the Hospital:
When we got back to the hospital dad was in a prep room for surgery to have a central line put in. It was the smallest room and he barely fit on the bed. Once we did all the normal greetings, things got a little more serious. I remember dad put his hand on my right arm and told me, “It’s bad. I have cancer.” They found out earlier that morning. I was stunned and I immediately started crying. My dad cried with me. I was 21 years old, and it was the first time I ever saw my dad cry.
The next few hours were a blur...literally. Everything happened through rounds of tears. We didn't know what type of cancer he had. We didn't know what the life span was. We didn't know if he would choose to fight. We didn't know anything. All we could do was wait.
As time went on we learned dad had stage 3 Multiple Myeloma. There is no stage 4 in this type of cancer. But the important thing was to fix dad's kidneys first, and then we would work on fixing the cancer. For those who don't know, kidneys functioning level is determined by a protein called creatine. Normal is around 1.0, 12.0 is critical. Dad was at 11.98. According to his doctors there wasn't much hope that dad's kidneys would come back and if they did it most likely wouldn't be to normal level. In fact, he had less than a 5% chance. We were told he would need to have dialysis 3 times (minimum) a week for the rest of his life. As far as the cancer goes, he needed to have a transplant once the cancer came down to a certain point and when his kidneys got better. Our oncologist said he hoped dad's creatine would be around 3 or 3.5 when the transplant would take place, but we wouldn't worry too much about that right now. So they started dad on dialysis right away for about 6-7 hours every day. By the third day they stopped because his kidneys responded so well and they wanted to see if his kidneys could hold their own. They did. After a few weeks, his kidneys came to a normal range and daddy never had dialysis again.
Dad also had bone scans done and we found out he had some fractures in his legs, back, and skull. This happened because all the protein and calcium was leaking out of his bones and going into his blood. This is the main reason he was in kidney failure, because your kidneys filter your blood and there were enormous amounts of calcium and protein in his blood system. These fractures were also part of the reason he was in so much pain when he was working.
Fighting Cancer:
Once dad's kidneys came back we were able to fight the cancer full force. He started chemotherapy a few days after he was admitted into the hospital and slowly worked up to a stronger and larger dose of chemo by the middle of the summer. By October he was able to have a bone morrow stem cell transplant. I won't go into much details of the transplant process, but it was the roughest thing I have ever seen. Basically the transplant process kills your entire immune system. Dad had to go into isolation (from other people-mom and I were able to be around him) for 100 days. Daddy lost all of his hair (except for his eyebrows and eye lashes) and lost about 50-60 pounds and became incredibly weak. For about a month the only way he could get from one place to the other was in a wheelchair. It wasn’t until Christmas time that he was strong enough to come out of his room on his own.
Follow Up:
In February 2011, he hit his 100 day mark (from the transplant) and his cancer progression was reassigned. They found a little bit of the cancer left in his body so his prognosis was 'pretty good partial remission’, not complete remission. He went back on a low dose of chemo, which they do even if the patient is in complete remission--studies have shown that it prolongs life. He also began his inoculation (he has to get all the basic shots a baby gets, up to the 2 year shot). In May of 2011 they found that there is only a teeny tiny line of cancer still in his body.
Year One
May 28, 2011
It has been exactly one year. My little family has been through so much. We experienced numerous trials and triumphs. And most importantly we experienced many, many miracles. I moved home immediately after dad was diagnosed and spent many evenings watching movies with him through his recovery time. We have also become great friends with our doctors. They have experienced all the hardships and joys right along with us. But most importantly we are all still here, fighting together as a team. A friend of mine once told me that God doesn't play by numbers. She couldn't have been more right. We have overcome what science has told us. Because according to science, my dad wouldn't be here today.
The Story Continues:
The rest of the year went fairly smoothly. In June we all came down with a horrible cold and it sent dad into the hospital for 3-4 days. (I’m glad we all got a cold because that meant that the bug dad had was actually bad and not just a little something that he couldn’t fight off.) Dad continued to take a chemo medication in pill form each day. He experienced a few side effects, but nothing too major.
In August 2011, we found out the cancer was almost non-detectable and he was in a deeper stage of remission than before. However, this news was bittersweet because the day we found this out was the same day we had to bury dad’s younger brother and best friend, who passed away in a bicycle accident.
[Side note: November 2011, my Grandpa H passed away. A week after his funeral my aunt (dad’s older brother’s wife) was diagnosed with a brain tumor. January 2012, my Grandpa B passed away.]
Year Two
May 28, 2012
We were given a little hiccup.
Since dad is a nurse, he watched his blood work results like a hawk and noticed all the small changes, even if they weren’t major. In April 2012 he noticed some changes in the blood work. Our doctors weren’t too concerned because his blood work was still negative and is always going to fluctuate. But a few weeks later, the numbers went positive and we found out that the cancer was coming back.
In May 2012 dad was sick with a gangrene gall bladder, which was not cancer related (we don't think). Dad's white count became so low that they had to take him off of his maintenance chemo in order for his white count to go up and for him to heal completely from the surgery. We went through weeks of waiting and not knowing what the next step would be.
Transplant #2 (with a lot more details of what the transplant process looks like-I documented it while we were going through the process rather than looking back on it months later like I did with transplant #1):
In July 2012, we were getting ready for transplant #2. After the first transplant, dad said he would never have another transplant because the first was so horrible, but surprisingly he wasn’t ready to give up and agreed to transplant #2 (without me or mom pushing it).
We did struggle with the timing of this transplant. My Grandma H’s heath declined drastically and dad thought mom should be there for her mother. (Transplant patients have to have a 24 hour care giver and that would be mom.) Just days before mom and dad were to leave to harvest cells, my grandma H passed away. Once her funeral was taken care of we went into full transplant mode.
The last week of July, my parents left to live at Hope Lodge while dad underwent treatment for his second bone morrow stem cell transplant. (He had his first one on October 14, 2010.) Hope Lodge is a place where patients can stay for free while getting treatment for cancer. You live in a room with 2 twin beds, a small closet and dresser, and a bathroom. You share a main kitchen with all the other patients who are getting bone morrow transplants and you get a small cubby in the fridge, the freezer, and in the pantry to house all of your food during your stay. You live on the honor system that no one steals your food, however, that does happen sometimes. It is like living in a college dorm, except half the people there are bald and there are various types of sanitation rules you must follow for the safety of the patents and you pray to God that everyone is doing their part to keep the place clean. It is rough living.
Instead of having treatment done at a hospital, it is done in a separate building called the cancer center. It is white and clean, and every door has a sink and sanitation dispensers. You must wash or sanitize your hands before entering the BMT (bone morrow transplant) section. The reason for all of this is because BMT patients do not have an immune system. For us regular folk, you get a cold, you feel miserable for a day, and you’re back to normal the next day. BMT patients can’t fight a cold. It has the potential to become something severe and they can’t fight it and win. This is the main reason BMT patients don’t have their treatment done at a hospital. Hospitals are covered in germs and have just about everything imaginable floating around their halls. Not a good place for BMT patients. Sometimes BMT patients have to go to the hospital, but they are in a special section that is closed off from the public.
The transplant process looks something like this. 2-5 days to harvest cells, 2 days of intensive chemo, 1 day off, transplant day, 28 days to engraft your own cells, 100 days (from transplant day) to recover fully from the transplant.
Confusing, right?
On July 23, 2012, mom and dad went to KC to harvest more cells. For dad’s cancer and this particular transplant they don’t use a donor. These patients have a much greater, positive, outcome from using their own cells rather than someone else’s. Because of this, they must harvest their own cells. Patients are hooked up to a machine that looks like a dialysis machine and they sit there for hours while harvesting. This process can take 2-5 days depending on how many cells they can get from your body each day. Before dad’s first transplant back in 2010, dad harvested cells and got enough for 2 transplants. Even though he had enough for this transplant, he was healthy enough to try again for a potential third transplant. (New advancements have shown some people can undergo 3 in their life…this wasn’t true 2 years ago.) Dad harvested for 2 days and they got more than they needed (enough for almost 2 additional transplants.) He got to come back home for the rest of the week before the transplant actually took place.
Then the following Sunday they left again, but this time for a much longer period of time. On July 30th and 31st, dad had the really bad chemo. This isn’t just any kind of chemo, it is the kind that takes you as close to death as possible without actually killing you. (Some people aren’t so lucky…) These days actually aren’t too bad because it takes about 5 days to feel the side effects.
Then he got a day off to relax and let is his body have a break.
And then the big day came. On August 2nd, dad walked into a secluded part of the hospital to receive his cells. This must be done in the hospital in case something goes wrong and then after a few hours, he is released and goes back to Hope Lodge. There is no surgery involved. They just push his cells back into his body through his central line. (I was lucky enough to experience the transplant process during his first transplant, but I had to work during this one and mom got to experience it this time (she was sick during the first one). It is such a bizarre thing to watch and BMT patients have a very distinctive smell to them after receiving their cells.
Dad slept most of the time in the days following the transplant. Each day he went to the cancer center to have his blood checked. There was a set of days where his potassium got low and he would have a few bags of potassium…one day he got 4!
For about 2-3 weeks after the transplant he got really sick. He tired to eat but he couldn’t keep any of it down (or in). (This is the complete opposite from his first transplant. During that one he refused to eat and never got sick. It is important that he eats because he needs the nutrients from the food to help him stay healthy.) There was one day where his temperature reached 100.5 and he had to go to the hospital. Thankfully the doctors didn’t see this as too alarming and he was only there a few hours and got to come back to Hope Lodge. (You have to call the doctor if you get a temperature of 100.5 of higher just to make sure you don’t have and/or are getting an infection.)
They check various things in his blood before they declare him healthy enough to go home. White count, platelets, ANC, among other things. The biggest number they are concerned with is the ANC. It shows if his cells have engrafted and if his body is starting to produce good healthy cells on their own. Once that hits 20, the doctors let you go home (as long as everything else is going well.) This time it took him a little longer for his blood work to be ‘good.’ On the 21st his ANC was at 15 and by the 23rd it only got to 16. Dad was anxious to go home and the doctor said if he gets to 17 or 18 by Saturday then he would let him go home….even if he wasn’t at 20. On August 25th, he had his blood checked again and he was at 17 and they let him come home!
When he got home he was pretty much confined to his bedroom (except going to the doctor). He slept most of the day, but that is normal. While he might not agree with me (or anyone else), the second transplant went much better than the first transplant. During his first transplant in 2010 he wouldn’t eat. It was hard to get even 2 bites down. He couldn’t get out of bed and had to use a urinal. He could barely walk and used a walker in the house (when leaving to go to the doctor) and used a wheelchair at the cancer center. After the second transplant in 2012 he ate, not hefty amounts, but enough. (He could eat a whole hotdog or hamburger and a few cookies or peanut butter cups.) He could get up to shower, go to the bathroom, and walk around. He could walk into the cancer center without any help (and shocked all the doctors and nurses too)! It was a major accomplishment.
In November 2012, we went back to dad’s 100 day evaluation. This time he was declared in “deep remission”, just a small trace of cancer was still in his body. There were a few concerns about some chromosome issues, but overall things were good. The following February 2013 dad went in for his 180 day check up and this time he was told he was in total complete remission! Since his cancer is in his blood, he will never get rid of it 100%, but right now it is not detectible in any of the tests they use to find Multiple Myeloma.
Year Three
May 28, 2013
At year three, things are great! Wonderful even! Dad is the healthiest he has been since his diagnosis, and probably before the diagnosis too. We are back to living semi-normal lives and it feels amazing! We took our first mini vacation in a few years and traveled back to Minnesota for a few days to experience a city that we used to call home 15 years ago.
In June we focused on fixing dad’s mouth. Dad went to a special dentist that works specifically with cancer patients out of KU Med and he saw the dentist about every other week to make some improvements. The cancer and treatments dad has been taking the last three years have been very harsh on his teeth and created multiple cavities and he had to have a few of this teeth extracted. When you have this type of cancer, dental work is very dangerous. You risk having serious complications. Thankfully, things went well; no shattered jaw bone, no major complications.
After seven months of being in complete remission, the cancer began to show its presence. In August dad started to have his one year check up post transplant (#2). They found precancerous cells in his esophagus and for the next month and a half he went to different doctors to have it looked at and discussed how to proceed. Also in August, the doctors saw movement in his blood work. Nothing major, but definitely something to keep an eye on. Unfortunately, the blood work from September’s check up confirmed it. The cancer is coming back. This means he is no longer in remission. This means the chemo is on is no longer working. This means we start all over again.
In September, we went onto Plan C. He had surgery to have the cells in his esophagus removed. Nothing too major, just preventing them from becoming a major problem in the future. After this surgery we were given the following options on what the next step would be.
Option #1: Drugs. He can take a concoction of drugs called RVD, which is made up of the drugs he has already taken, each one, one at a time. The cancer has already overcome these drugs, but there is a slight chance that the drugs working together could work. Slight chance. He can try two other drugs (can’t remember names) that he has not taken and that could work for about 1-2 years. There are two-three more drugs that are on the horizon, but have not yet passed drug regulation. The question is do we used up these drug options now or save them for later, should he choose a third transplant and his body does not reject the new cells.
Option #2: Research Trials. Gaining access to drugs that could work but are not open to the public yet.
Option #3: Transplant #3. This time from a donor. The outcome is not as high as if he used his own cells. If his body rejects the donor’s cells it is the end. As in no more options. As in he will have days left to live.
These options left us stuck between a rock and a hard place. When we were given these options dad was leaning toward option #3, the donor transplant. But before he made up his mind, he visited Mayo Clinic in Minnesota to hear about their research trials. After two visits, he decided he really wasn’t impressed with Mayo Clinic and wasn’t interested in their trials they were offering at the time. The one good thing Mayo did was rule out transplant #3 possibility. The outcome of patients with Multiple Myeloma accepting a donor bone morrow transplant was pretty much non-existent. So, he decided to try the drugs. They worked for a while, but they ultimately stopped working.
Year 4
May 28, 2014
In September 2014, dad began another chemo treatment. It is so hard to watch him go through that, but he is handling the drugs pretty well, which is always a good thing (considering).
And then November came. A week before Thanksgiving we found out that the cancer was mutating in a way. I never shared it on here, but at the begging of this year I sent the following text to Dakota's family and my closest girlfriends.
Dad hasn't been able to have chemo for the past month. Last week they gave him shots to boost his bone morrow and it didn't work so they ordered a bone morrow biopsy. The results came back and they said he didn't have a secondary cancer (which is what they were looking for). Yesterday he met with the doctors at KU and found out he has early stages of MDS which turns into leukemia (what Robin Roberts had). His doctors at heartland saw the MDS but it's so small compared to the Multiple Myeloma that they weren't going to deal with it just yet.
When you treat MM, the best thing to do is have a bone morrow transplant from your own body. It has a much higher success rate than one from a donor. Dad has done 2 of those. The best way to treat MDS is to have a donor transplant.
They want dad to try another round of chemo (3 weeks) and then they want to do a transplant as early as January. If he chooses to do a transplant and it works he will be at Hope Lodge between 6-12 months. His body will act like a brand new MM patient and he could have years to live. If he has the transplant and his body rejects the new bone morrow he will die in January. If he chooses not to have the transplant they aren't sure what the time frame is but when the doctor was talking it sounded like less than a year. There is a 27% chance that he will reject the new bone morrow. We have not made a decision yet, we have a month to do so but I wanted you all to be aware of what is going on. Please don't tell everyone about this, we want to keep is private until we make a decision.
When you treat MM, the best thing to do is have a bone morrow transplant from your own body. It has a much higher success rate than one from a donor. Dad has done 2 of those. The best way to treat MDS is to have a donor transplant.
They want dad to try another round of chemo (3 weeks) and then they want to do a transplant as early as January. If he chooses to do a transplant and it works he will be at Hope Lodge between 6-12 months. His body will act like a brand new MM patient and he could have years to live. If he has the transplant and his body rejects the new bone morrow he will die in January. If he chooses not to have the transplant they aren't sure what the time frame is but when the doctor was talking it sounded like less than a year. There is a 27% chance that he will reject the new bone morrow. We have not made a decision yet, we have a month to do so but I wanted you all to be aware of what is going on. Please don't tell everyone about this, we want to keep is private until we make a decision.
So here we are in May and clearly he hasn't gone through with the transplant. So where are we now? The doctors seemed to take their time finding a donor and just last month we found out that dad's oldest brother is a 100% match as well as a female donor who is also a 100% match. At the time we were told this, we were 6 month out from the wedding and dad decided that the wedding comes first. Which, to be honest, I'm glad he thinks this. We have been dealing with cancer for 5 years. Through out these 5 years, I met an amazing man and we are getting married, and my dad will be there. Something that I was very unsure would happen back in 2010. So we are playing that waiting game again. Dad is continuing with chemo treatment and it is holding the cancer at bay. He will walk me down the aisle and give me away and then sometime this winter or early next year, we will relook at options and doing a donor transplant.
5 years...I cannot believe it.
I love you daddy.
