So it's been over two years since I've posted last to my blog here. I apologize for the delays for posting. I've had a lot going on, very little energy to do much of anything until the last few months. I'm slowly getting back to some form of normal, if I will ever be able to get to that again. I say that, because I've had some major Medical issues that have arisen in the past year and a half to two years since my last post.
Basically, last May, 2018, I was finally properly diagnosed on what was ailing me. Unfortunately, what that is happens to be something that will stay with me the rest of my life. However long or short it is. I have been diagnosed with Multiple Myeloma Cancer. For the long and short of the story, I'm going to copy and paste the story, and my updates from my go-fund me campaign page. I'll also Include links here to both my Facebook fundraiser as well as my go-fund me page. I apologize in advance for my horrible photos, I don't look all that good in them.
Go-Fund-Me : https://www.gofundme.com/f/stevehafner
Facebook Fundraiser : https://www.facebook.com/donate/2160338577353193/
Here we go with the Copy and pasted story from my Go-Fund-Me:
"Last fall I hurt my back (thought it was from lifting a mini frig), and was treating it as directed by a physician using NASID (Motrin, Ibuprophen, etc.) thru August and September. End of September I’m not getting any better and after 3 ER visits, 1 Urgent Care visit and god knows how many visits to my primary care provider I hit the ER one last time and they caught me in a stage 4 kidney failure. At this time they thought it was due to the NSAID’s over time. Early October, I was released as my kidneys were getting somewhat better. Unfortunately my back wasn’t; even after 2 lumbar steroid epidural injections. I was sent home and as I prepared for a family vacation I broke 2 ribs bending over from my office chair. The back doctor referred me to an endocrinologist finally after the pain management and back doctor couldn’t figure out what was happening (this was now early January of this year).
The Endocrinologist finds multiple deficiencies which included but aren’t limited to severe osteoporosis (I’m 42 and male so this is really odd) and low vitamin D, low Testosterone, severely anemic and what looks like possible Celiacs-Sprew disease (gluten intolerance) at this time I start on the meds he prescribes and he referred me to an oncologist. The oncologist did more blood work and at the time I didn’t show anything else was wrong. They had performed by this time MRI’s on whole body on my back on my head to ensure no pituitary gland tumor, ultrasounds on my thyroid and parathyroid to ensure no issues with them, and CAT scans as well. Everything started seeming to get better, even my back was better at times . What was even better ... I was able to walk without a cane.
Mid-March of this year (2018) things start going downhill, and my upper body/chest is in pain from strain trying to compensate me walking with the bad back. It had gotten to the point that I couldn’t walk unaided, couldn’t catch a breath because of the chest pain and essentially became bed ridden early to mid April. I now use a walker to get around my bedroom and to the bathroom, which is 10 to 15 feet away from the foot of my bed, takes me a good 30 minutes at this point.
So I had a follow up on April 30th with the endocrinologist and he pretty much called it from the blood work and labs but wanted to be sure so sent me back to the oncologist. At that visit, the oncologist wanted to do a bone marrow test and because its an ordeal and I mean excruciating painful ordeal for me to get to a doctor at all I opted to do it then and there. Follow up appointment is where it was confirmed from the bone marrow test that I indeed have Multiple Myeloma cancer and it is also possibly the root cause of my back pain as well. After this I had a PET scan which confirmed they see the cancer in my back. My treatment starts tomorrow with Chemotherapy, Steroids, Radiation and then calcium infusions once a month. These are to last 4-6 months. If all that goes as planned, they will then refer me to a larger cancer center such as Duke, Emory or MUSC to do a bone marrow transplant/refresh. This from what I understand is done with my own existing marrow being extracted, cleaned and then replanted. I’m assuming its some sort of steam cell therapy deal. I don’t know what stage it is, I asked yesterday and they said it’s more like a chronic cancer because it starts in our plasma which circulates everywhere throughout your body so there is no way to isolate it. During one of my trips to my oncologist to have chemo treatment, I began to sweat profusely and the oncologist was concerned with the amount of pain I was experiencing and opted to send me to the hospital to be admitted to get the pain under control. This was 3 weeks ago and I have had some setbacks, which included being in the ICU due to breathing difficulties. I am back on the oncology floor hoping I can go home soon. I don’t know anything more about the prognosis yet, life expectancy, etc. I just don’t know. I’m still in shock from it all. I partially can’t believe it is what I have. One chemo prescription pill is $20,000 - per dose cycle. I may need 4 – 6 dose cycles. The doctors are upbeat and my wife has been a God send as she is here each morning before work and after work." ~ Steve H.
The following update(s), was posted by my wife 13 months ago :
"I can't thank everyone enough for all the prayers for Steve Hafner, today was a huge step for him, he was able to get up and sit in the recliner for several hours til he had to go for radiation. You are doing such an amazing job babe i'm so proud of you, you have shown just how strong you really are and i couldn't be more proud! Please keep the prayers coming we still have a long road ahead" ~ Emily H.
"We are now going on 7 weeks in the hospital. The medical bills just keep pouring in. We are almost set to go into rehab at a facility not to far away from the hospital. Physical and Occupational Therapy will work with Steve everyday in hopes they can transition him to going home. We are very hopeful that with the help of therapy he will be well on his way to recovering. We can't thank everyone enough for the love and support we have gotten . People have gone above and beyond for us. Love you all!" ~ Emily H.
"So we were discharged from the hospital Friday to go to the rehab facility. We left about 2:30 on a Friday and got to the facility around 3. From the moment we stepped foot in this place everything went to h*ll. That night came around and my husband had been asking for pain meds. Hour after hour went by. Saturday morning I find out he still hasn't had pain meds. We are now going on 21 hours without pain meds. As most of you can imagine I FLIPPED out in the nurses. I was shaking and crying as I was so upset.
7 months ago, I started to post again on my own.
"I'd like to take this time to post another update. I've been very busy as of late since my last updates.
We are now approaching Christmas and I've been fortunate to recover as much as i have. I've been able to return to work in a limited manner somewhat, but the bills keep rolling in, so any help here is greatly appreciated and most definitely needed, especially with the upcoming 1st of the year roll over and my insurance starts all over again.
I've had 2 bone marrow biopsies since the last update. I spent 2 months at in home care nurses and physical therapy which helped me considerably and at the end of October i was able to start working in a limited manner again. Thank goodness for my co-workers and those folks. they are super understanding and take care of me while im there, ensuring i don't over do it. I tend to get weak fast and suffer from a lot of fatigue quickly, more quickly than i want to admit to be honest. The first bone marrow biopsy stated my bone marrow levels of myeloma went from 90% to 65% and is not enough to move forward with the bone marrow transplant.
We went to MUSC in Charleston to have our first consultation with the transplant team, and they stated that 65% is not enough. we need more so they changed my chemo regimen to 2 different things. One is called Cytoxen and the other is velcaid. They together are doing good as my 2nd bone marrow biopsy showed as while they tire me out and make me very sick, they brought my myeloma levels down from 65% to 20% roughly. We then had another meeting last week in Charleston at MUSC. My doctor there stated i'm still not low enough and as such he wants me to go onto a third regimen of chemo. this chemo is going to be the strongest yet, and i'm scheduled to start it on Dec. 27th. This is a full inpatient admittance to the hospital in Lexington to take the first dose, so an overnight stay. My anxiety is already high after my last experience in the hospital a few months ago, the last thing i want is to be in the hospital for another period of time at all. Again, more money will be charged and more will spend. I also found out that because of chemo, my teeth have gotten worse. I had just completed 15k of work on my teeth when i got sick with the cancer, and finally had them fine, but now i have another 5k in stuff i need done, including another root canal before i can even go down to Charleston for the bone marrow transplant. the hits just keep coming financially, but i'm still alive, i'm ambulatory, and i'm very very VERY thankful for that, and for all of you who have supported me during this very difficult time of my life. All i can say is if you would please continue to support me, share my go fund me, and help me any way you can, prayers, or other wise, it is greatly appreciated. God knows i can use any help i can get, and it is only through his grace and love will i be able to make it through this. Thank you all for your time in reading this and i'll try to not keep the updates so far apart so its not so much too read next time. Thanks." ~Steve H.
"Here's our 2018 Christmas Photo. As you can tell, my back is pretty jacked up. I've learned from the last PET scan that at this time i have a broken rib, and TWO broken vertebrates in my back. the l5 and l7 are fractured as well here in this photo. Im not sure what else is because my nurse practitioner is supposed to call me back soon and has yet to do so. Anyways here's the most current photo i think i have of myself and my primary caregiver, and ultimate awesome loving wife, Emily. Without her i'd be so lost, and i'm more thankful than i can ever express that i have her in my life not just to take care of me but for everything."
"Well, this past Thursday i had to be admitted to the hospital here in Lexington to change up my chemo routine. It was for a 10 hour chemo drip and then to be observed for the remainder of my night in the hospital. I had some anxiety about returning to the hospital after the last time i was there, but overall this visit went just as was planned. In fact it was nice to see many folks that cared for me before, and they were all very kind and glad to see me, which overall made me fell good that they thought i was doing so well.
Anyways, the Chemo went without much of a hitch although i am experiencing some insomnia and a bit of nausea from time to time. I will next wait for the phone call from my normal chemo nurse to schedule my next chemo appointment as an outpatient as before. from what i understand this should take 5-6 hours to administer per drip per week. I believe it will be on next Thursday that this starts.
Thank you all for any donations, prayers, or kind thoughts, as I can use them all desperately." ~ Steve H.
Anyways, the Chemo went without much of a hitch although i am experiencing some insomnia and a bit of nausea from time to time. I will next wait for the phone call from my normal chemo nurse to schedule my next chemo appointment as an outpatient as before. from what i understand this should take 5-6 hours to administer per drip per week. I believe it will be on next Thursday that this starts.
Thank you all for any donations, prayers, or kind thoughts, as I can use them all desperately." ~ Steve H.
"I've now had 3 treatment of my new chemo drip, and I've also started to take as of yesterday a new chemo pill daily. It is a bit early so far to see how it is effecting me, over the long term with the new pill but as for the Drip it pretty much wipes me out after 2 -3 days of having the infusion. so for example i get the IV drip every Thursday and that takes 6 hours or so. After i have it I'm pretty much wired for sound due to the steroids i think. I have a hard time sleeping for 2 to 3 days, and then by Monday i start to crash, and crash hard. I will have issues keeping my self awake sitting at my desk at work upright in my couch or chair at home, forget it, if i'm even in the slightest bit possibly comfortable i'm going to fall asleep. then slowly it starts to go away, right about Wednesday night, i'm back to normal, just in time for the next infusion on Thursday morning. Now adding the new chemo pill to that, who knows what will happen. I have only 22 more days of pills to take at this time. Oh and did i mention each prescription of this pill chemo is 25,000.00 before insurance and any discounts i can get. So yea, its pricey. Anyways, i'm going to go now, and i'll keep y'all updated keep the prayers and help coming, Its a new year which means all new deductibles to meet and more and more bills :( . God bless you all." ~ Steve H.
"The latest news is that i am scheduled to go to Charleston on the 24th of this month, for 4 days. This is to harvest my stem cells. The Stem Cell harvest can take anywhere from 1-4 days. they are also going to put in a port for my chest for administering and drawing blood and all that at that time. The other side of things is no one told us that i could go sterile, and most likely will, by the end of the chemo and end of the bone marrow transplant. This is very saddening to us as we want our own children. at this point I'm taking steps to see if my semen is currently viable for banking before the bone marrow transplant, which has also been scheduled for march 13th. If all is well, my semen will be viable and healthy still, i will supply a bankable specimen come the week of the 6-12th. time will tell. That's where we are right now. the anxiety and nervousness is building and a lot is going on, bills are adding up, including a 7k hotel bill that will be for our time in Charleston. thank god for you all, and thank god for my family. without all of them i'd be lost now." ~ Steve H.
"Stardate February 24th, 2019; roughly 9: 40pm-ish.
tonight is the calm before the storm. I go tomorrow morning at 645 to MUSC for a Hickman Catheter to be inserted and installed in my chest . at which time i will then be moved to start the harvest of my stem cells. the goal is to harvest 12000 stem cells or so (maybe more maybe a little less). Once they have gotten their fill of stem cells, they will go ahead and put them on ice or about 2 weeks. I will get to go home until the 13th of March. this of course is all pendant upon them getting enough stem cells in the next 3 days or so . You see i'm down here in Charleston from now until Wednesday at the latest roughly. if they finish up earlier, they will send me home earlier. I've had a ton of support from you all. and I've had a ton of support from my wife's family and for this i will forever be indebted, thankful, and ever so lucky. If it was not for my in-laws, i doubt much of this could happen, or would happen thus far. Every bit of help you guys, my in laws, or anyone else will feel to give helps me exponentially. most folks have no idea, even if its non-monetary, and just a gesture of faith, prayer, or kind words, it helps so much more than i can put into words. Please keep all of those coming, as i will be able to reciprocate them to others who need the help in their lives as well. Thank you all again. From the bottom of my heart, thank you." ~ Steve H
5 Months ago roughly :
tonight is the calm before the storm. I go tomorrow morning at 645 to MUSC for a Hickman Catheter to be inserted and installed in my chest . at which time i will then be moved to start the harvest of my stem cells. the goal is to harvest 12000 stem cells or so (maybe more maybe a little less). Once they have gotten their fill of stem cells, they will go ahead and put them on ice or about 2 weeks. I will get to go home until the 13th of March. this of course is all pendant upon them getting enough stem cells in the next 3 days or so . You see i'm down here in Charleston from now until Wednesday at the latest roughly. if they finish up earlier, they will send me home earlier. I've had a ton of support from you all. and I've had a ton of support from my wife's family and for this i will forever be indebted, thankful, and ever so lucky. If it was not for my in-laws, i doubt much of this could happen, or would happen thus far. Every bit of help you guys, my in laws, or anyone else will feel to give helps me exponentially. most folks have no idea, even if its non-monetary, and just a gesture of faith, prayer, or kind words, it helps so much more than i can put into words. Please keep all of those coming, as i will be able to reciprocate them to others who need the help in their lives as well. Thank you all again. From the bottom of my heart, thank you." ~ Steve H
4 Months ago roughly:
"So, Today is the calm before the storm.
Tomorrow 3/13/19 is the day that I go to start my Bone Marrow Transplant. I will begin in tomorrow morning at MUSC and have a really high level chemo dose to basically kill my immune system. Then Friday, 3/15 i'll be receiving my stem cells back, to jump start my Immune System.
They say the first 14 days are the most critical, and if i can make it through those without a fever, and without much difficulty I should be good to go. The entire process should take about 30 days. To say im not nervous would be a lie. Hopefully this will go as according to plan as it can, and hopefully it will work out positively in the long run in putting my cancer to remission or getting me cancer free. Either would be a godsend. Thank you all for your support of me in the past, your prayers, and any support and prayers you offer me in the future. I still have my go-fund me, and i have a paypal (GamecockOperator @ gmail dot com as a gift) you can gift if need be. The bills are becoming astronomic.
thanks again, God bless." ~ Steve H.
Tomorrow 3/13/19 is the day that I go to start my Bone Marrow Transplant. I will begin in tomorrow morning at MUSC and have a really high level chemo dose to basically kill my immune system. Then Friday, 3/15 i'll be receiving my stem cells back, to jump start my Immune System.
They say the first 14 days are the most critical, and if i can make it through those without a fever, and without much difficulty I should be good to go. The entire process should take about 30 days. To say im not nervous would be a lie. Hopefully this will go as according to plan as it can, and hopefully it will work out positively in the long run in putting my cancer to remission or getting me cancer free. Either would be a godsend. Thank you all for your support of me in the past, your prayers, and any support and prayers you offer me in the future. I still have my go-fund me, and i have a paypal (GamecockOperator @ gmail dot com as a gift) you can gift if need be. The bills are becoming astronomic.
thanks again, God bless." ~ Steve H.
3 Months ago roughly:
The hotel we had rented was a residence inn, it was in west Ashley, so it was really close to the hospital. We were lucky to have had it, and it was a 2 bedroom suite, so my father in law and wife and i were able to stay there comfortably but the overall bill was darn near 7000.00 for the month, plus the week before when we were down to donate the stem cells. Nothing is cheap, and compared to the treatments that was a small price to pay and luckily the fund raisers are helping some with that, even though they cant cover it fully. So after i was released back to the hotel, we spent 2-3 weeks going in every day, being checked out, and having things like my magnesium and potassium levels filled because they were not high enough. Luckily those things were easy fix's with the IV drip, and then last Thursday a week ago they finally said i could go home.
I have to do checkups for the remaining month of April. This means i have to drive down to Charleston so far once a week. I went this past Monday, and luckily all checked out. my labs were very good they said, and while they are concerned with my nausea issues which have been persistent for the past two weeks, they are overall pleased. Next week i have to go back on Wednesday for another checkup. Luckily for me a good friend is going to drive me as my wife has to work and my in-laws have all gone home. Anyways, that's where we are with things right now." ~ Steve H.
Hey guys, i figured i'd give yall an update. These past few weeks have been a roller coaster ride for me of emotions. June 23, 2019 was my 100 day anniversary since i began my bone marrow transplant. As many of you will recall i had to stay in a hotel for a month in Charleston (including the week that i was admitted for pneumonia). The bone marrow transplant went well overall, minus the Pneumonia of course, but they were able to take care of me and get me over that. At 31 days they released me from having to be local, which is great, because after having to spend 7400.00 for the hotel alone we were getting pretty tapped out cash wise, and we returned home to Lexington. Once in
Myeloma response criteria is:
- complete response (no myeloma detected on labs/ blood work/ bone marrow)
- very good partial response (90% of the myeloma is gone)
- partial response (50-89% of the myeloma is gone)
- stable disease ( numbers do not meet criteria for partial response or progressive disease)
- progressive disease (numbers are increasing).
The IMWG is who made this criteria (International Myeloma Working Group)
The good news also is that not only am I in partial Response, but my numbers may continue to go down as i continue on my maintenance program of a chemo drug. so i'm very happy with those results thus far. So much so that my wife planned and executed a very nice 100 day celebration party for me on the 29th of June. It was a great time, and i was glad to see many of you my friends, show up to celebrate with me. However, this past weekend i got some very bad and sad news.
You see when i was diagnosed in May of 2018, i found out that a high schoolmate of mine named Denise was also diagnosed with the very same cancer i was, Multiple Myeloma. As i fought my battle she fought hers, and we talked via Facebook fairly often about how each of our battles were going. Around January she told me that she was in remission, and was able to be there solely by having underwent chemo therapy and radiation. I was envious as i was ramping up to go to Charleston, for my BMT(bone marrow transplant). I had been undergoing Chemo treatment for 3/4th a year by this time, and had LONG been done with my radiation therapy. I had had some issues with the chemo, in fact they had to change my type three times before it really started to make a dent to drop my counts and get me ready for the BMT. You can imagine how anxious i was at this time waiting for the date of the BMT to come, as that was a real big event, and i was worried about the side effects. And finding out that Denise had been lucky enough to get into remission without having to do a Bone Marrow Transplant made me very envious/jealous.
Nevertheless, Multiple Myeloma effects each person differently. Denise had a lot of other issues than i had, from the Cancer. where i was broken vertebrae's left and right, and breaking ribs, and a broken sternum, and things like that, Denise not only had broken bones but she also had became partially paralyzed as well i was told. So while i was healing and able to move, and even though Denise was in remission, she couldn't return to her normal life. When i had came out of my BMT and returned home Denise was still being treated and i was healing up. Then about two or so weeks ago Denise told me that she's been having more difficulties, and that she's stopped having any reaction her chemo treatments and her radiation treatments. But the worst part of it, was the doctors told her she had only about 8 or so weeks left to live. This really was a sad thing to hear, and i continued to try to be brave for her by being positive when we talked, and also i continued to pray more for her.
Well this past Sunday sadly Denise lost her battle with Multiple Myeloma Cancer. I cannot believe she's gone so fast, and i cannot believe that she went so quickly compared to what the doctors gave her. To know that I'm fighting the same fight, no matter how different it effects us as individuals, really has been messing with me since she passed last Sunday. I am comforted knowing she is in a better place with her savior Jesus Christ, but at the same time i know a great person has left this world just a bit dimmer, and a bit more sadder. The reality is, it could have just as easily have been me, in her shoes, and that too truly bothers me. I will continue to try to be as positive as i can, and I will continue to try to fight this evil disease as much as i can, but the fact remains that I have it, and until it's gone that is all i can do, Fight it.
I truly appreciate all of my support system, family, friends, and Pastor, without them i'd be lost. Also, I couldn't have made it this far without you guys having supported me as much as you have in the past, and currently with your prayers, positive vibes, and the donations you all have donated to me. Some folks have asked how they can help me, and how to donate to me, and while I have this GoFundMe, I also can still accept donations at my Paypal as gift. My Email for that is GamecockOperator @gmail.com (without the space. I also can accept donations from my Facebook fundraiser page as well. If you want to use those routes, please feel free and hopefully i'm not violating any gofundme rules by mentioning them. Mostly, please continue with your positive vibes, positive thoughts, and Prayers for me. Without those, I wouldn't be so successful with this battle as i have been thus far. Thank you all again. and please if you don't mind send up a little prayer for my friend Denise and her family, may she rest in peace. She's finally without pain now, and truly without this evil Cancer.
p.s. sorry for the wall of text." ~ Steve H.
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