Last Updated September 25, 2001
Reading all of the stories compelled me to write to you. This is our story, though be it far from over, hopefully it will help others in some way, some day.
Chris (my husband) is a 33 y/o very active hard working man. A devoted husband and father. Our story actually begins (now that we have had time to think back) approx. a year ago. I was undergoing a Heart Cath procedure and Chris was concerned about me. He noticed that his left testicle was somewhat 'tender', but he never ever mentioned it to me. He says that it alarmed him but that it went away after a few days. He didn't think anything else of it and didn't want to worry me over nothing.
Then a few weeks ago (April 2001) he noticed that his left testicle felt 'a little hard'. Since he does a lot of heavy lifting, etc., he kept an eye on it but did not get overly concerned right away. He did tell me about it this time however. As he actively kept close watch on it, he noticed it was getting harder and harder, and it was beginning to swell. There was no pain, just a sense of heaviness and being uncomfortable with the swelling. During this time he was doing research on the web without telling me. After reading some info, he decided to see a Urologist. (He didn't mess with a Family Medical Doctor, he went straight to a Urologist!) He then told me that he had made a doctor's appointment. My reaction was 'what for, are you feeling bad?' This is a man that is never, and I mean NEVER, sick. Never even takes Tylenol, and never complains. And for him to tell me he had made a doctors appointment puzzled me. He told me he was worried about the swollen hardened left testicle. SO...OK...he must have lifted something too heavy, and at worst it was maybe a hernia. The thought of CANCER never once entered my mind.
I did not accompany him to the initial visit to the Urologist (which I deeply regret now) because I have recently started a new job, and I was still on my 90 day probation period. So I get a call from him at work the day of his appointment. The news was like a blow to my stomach. His Urologist told him that he suspects Testicular Cancer, and that he was on his way for blood tests, an ultrasound and a chest X-Ray. I could hear the fear in his voice! And I wasn't there with him to help him! I totally lost it at work, and within 5 minutes the entire office building where I work knew something was horribly wrong. That (I thought) was the longest 2 hours of my life until I got home and just held him, and he held me!
The next step was to wait for the results and to see the Doctor in his office on Monday morning. Dr. Graham had told Chris that he wanted us both there. Again, the weekend of not knowing was an eternity! I spent the weekend on the Internet gathering as much info as I could so that we could know what questions to ask...a starting point. And we began to inform relatives and close friends of what was happening.
Finally...Monday morning 8:30 AM arrived and we got the news. Dr. Graham confirms his thoughts, "The tumor markers are high (AFP and LDH are high, bHCG is normal), and the ultrasound shows a solid mass in the left testicle. Along with the testicle is nearing triple the size of the normal one", "but your Chest X-Ray is clean!" THANK GOD...there is some good news in this blur of emotions!
Dr. Graham informs us that it MUST be removed. So OK, my husband says to him..."whatever happens, I want the full guns going here, don't hold anything back...we ARE going to beat this!" Surgery was scheduled for Friday, May 4th, 2001. Again a very long 4 days! The emotions, the determination even before knowing exactly what this cancer is, it is all happening SO fast, but yet not fast enough....if that makes sense. In a weeks time our entire life is turned upside down! A man that is NEVER sick is now facing cancer!
I felt angry, scared, helpless, and prayed more than I ever have in my life. I felt angry..but at what? My life prior to meeting Chris had not been easy, and for once in my life my heart and soul was complete. I had the absolute love of my life, and life was good. Chris is a wonderful man, and WHY was this happening to Chris, to us...oh no, this just can not be happening!!!!
But the anger quickly turned to support of my wonderful husband, for better or worse, richer or poorer, in sickness and in health! Don't get me wrong, we are both still scared and unsure of what will happen next. But with his sense of immediate refusal to let this beat him, and my sense of overwhelming support and love for my husband, we have a positive attitude and are eager to learn as much as we can about all of this.
Another shock we learned this week... since Chris has never been sick, and has only missed 5 days of work in 12 years with the same company, he did not know that he does not have ANY temp. disability, much less long-term disability insurance, he's never needed it. My God what are we going to do! (Please people...even if you are like Chris and have never been sick a day in your life...please check on these things NOW! Make sure you are covered. We have very quickly found out the hard way that things can take a turn on you and be faced with a potentially major financial hurdle, as if the worries of Cancer itself isn't enough!) Thank God we do have medical insurance, but medical insurance is just not enough with something like this.
Medical Insurance does NOT pay the house mortgage, or light bills! God had a plan when he blessed me in landing a fairly good job just 4 weeks before this all happened. But none the less, what the future is going to entail is quite scary!! In a matter of a week, we are faced not only with cancer, but also the loss of a income for God only knows how long. And in a weeks time, I am trying to deal with emotions, balance a new job, AND care for my husband (and a daughter still at home). My plate is full! BUT... I would trade places with him in a heart beat! Give this disease to ME instead, please God...not Chris! I've cried myself to sleep since day one with this prayer. Let it be me instead!
Friday, May 04, 2001
We arrived at the hospital at our scheduled time of 9:30 AM. Surgery was at 11:00 AM. At 11:15 they wheeled him out of his room to the OR. I gave him a kiss and, holding the hand of his mother, my daughter, and our best friends (our next door neighbors) we headed to the surgery waiting room. At approx. 1:00PM Dr. Graham enters the waiting room and comes over to me with a smile on his face. "Everything went great and he is in recovery. He can go home in a few hours"! WHEW! Then he turns to walk off only to tun back around and says, "The easy part is over. I want you both in my office next Thursday for the Pathology results". Bearing in mind that all of the pre-surgery blood work (tumor markers) indicates that this is a non-seminoma germ cell tumor, or that's what Dr. Graham suspects pending the full pathology report.
We were home by 2:30 - 3:00 PM. Seeing my very active, never sick husband barely able to walk was tearing my heart out. Please God, send him a Guardian Angel! We made it in the house only after he got sick and up came the Dr. Pepper that they had given him in post-op. And the fact that he weighs 5'11' - 230lbs, and I am a small 120 lbs (soaking wet) woman trying to help balance a drowsy, hurting, just had his left nut cut out, man! But we made it and got him straight into the bed. Then a rough rocky night came. He got sick again later, projectile type sick, and was sure he had ripped some stitches. A quick check of his bandage revealed no added bleeding, and once I got him back into bed, and two pain pills later..he was resting calmly for the remainder of the night (so to speak).
Saturday (today) he is extremely sore, his scrotum is black and blue (literally) and very swollen! The incision in his groin is fine, very little bleeding showing on the bandage, but tender of course. He was able to sit up, and move around fairly well, although very slowly. His spirits are high, and even though he is in moderate pain...he even spent time on his computer reading some of the personal stories here. Getting up to go to the restroom causes him to get extreme bouts of the shakes and feeling cold from the pain (mainly in the scrotum not the incision), but it is quickly relieved once he is back in a relaxed position laying or sitting.
Now we wait until Thursday for the pathology report consultation! We pray that the guardian angel that I prayed for will continue to help him recover, and protect and help him through whatever is to come. I am not a patient person when it comes to waiting on these things. My nature is... I want ALL of the tests done now, and I want results now! Human beings can deal with whatever they are faced with in life WHEN they know WHAT they are faced with. It is the waiting, and not knowing, that we can't cope with.
I will update this as Chris's TC case continues. Since the Chest X-Ray was clean, we are being told that it has not spread to the lungs, however it is the lymph nodes that we still have to check and worry about. Dr. Graham says the CT Scan will be next.
Sunday, May 06, 2001
Day two of post-op recovery:
It seems that Chris may have overdone it yesterday, possibly sitting up too much. He seemed to be more swollen last night, so he has been resting on the couch today playing Nintendo Games and watching TV. Only getting up to go to the restroom and move about for short periods of time. He seems more 'tired' and quiet today! His appetite is good however. No fever since surgery. But no bowel activity either, which isn't good? If he has not had a bowel activity by tomorrow, he wants me to call Dr. Graham to make sure everything is ok. This may seem like small silly stuff to you more experienced TC'ers, but remember this is a man that is never sick and does not know what to expect or not expect.
In my story beginning that I wrote yesterday, I failed to include his pre-surgery Tumor Marker Results. Maybe someone out there can assist us in being able to understand how to read them and what the numbers really mean. Do results from certain tests mean certain things, which test are indicators of what, etc... With the below tumor markers, and the ultrasound...Dr. Graham's pre-op diagnosis was stated as Non-seminomatous Germ Cell Tumor, probable Stage 1 - pending CT Scan and pathology reports. Chest X-Ray was clear!
pre-op Lab Results: Tests date (4/25/01)
LDH = 322 IU/L H
AFP = 220.4 ng/mL H
bHCG = <5
Although Dr. Graham said the a pre-op Serum Testosterone Level was not necessary, thanks to reading info on this site, we INSISTED on the test being done. We will get the results to place in Chris's Medical Planner notebook for our future reference if ever needed. They did this test at the hospital when we pre-registered him for surgery. Without having read that info on this site, we wouldn't have even thought about that simple test. Why would we? His hormones are fine right, it is Cancer we are dealing with now, not hormonal issues. Emotions and fear were grabbing hold of us like a blurred quick vice grip!
Even though the long weekend of waiting for the initial test results felt like an eternity, I believe that God has a purpose for everything! The eternity of that long weekend allowed us to find more information, find the TCRC, and know what questions to ask, etc. My purpose for telling you all of this is to say....don't always 'dread' the long waits. Use the time if for nothing else then to just laugh as much as possible, hold your loved ones, and PRAY! Being the impatient person that I am, using the time to research TC, pray, and just be at my husbands side in his big loving arms is what got me through that first long weekend of facing the unknown.
Be careful what you pray for, unanswered prayers can also be a blessing! I prayed for IMMEDIATE test results, and got the 'unanswered prayer' of being able to find TCRC and information, and spend an absolute unforgettable weekend with Chris! We both already understand that our relationship, our love for each other and our family, and our commitment (vows) to each other are already made stronger by this...and we have a lot of medical unknowns ahead of us! Yet, I KNOW without a doubt that no matter how bad it gets, no matter how bad his moods may get...I KNOW that he loves me totally and unconditionally! And Chris KNOWS without a doubt that I will be there for him, with him, to love him as equally and unconditionally as ever before!
Monday, May 07, 2001
Bowel activity returned to normal today without any medications. However, Dr. Graham recommended a stool softener, just as precaution. He told Chris that it is ok for him to shower now, (sponge baths have been it since surgery day), and that it is ok to remove the bandage on the groin incision if Chris wants to.
Still no pathology report! ARGH!! We go for his follow-up appointment. Thursday at 3:30pm and will get the Path report then (hopefully).
Chris feels pretty good today. During the night last night he broke into a cold sweat, and said he thinks maybe he had some low fever that broke. The swelling has gone down maybe 1/3, but it is still the size of a large orange maybe. Whereas yesterday a grapefruit was more an accurate description. Still very sore, and very bruised. He is able to move around a bit better today but still slow.
He is already getting restless from not being able to do anything. But his spirits are still high. He has already decided that IF Dr. Graham recommends removing the lymph nodes, he is going to do it. What ever it takes to get this Cancer completely out of his body! But we won't know any of that for several more days, maybe longer. We still have to do the CT Scan and I am going to INSIST that he go ahead and schedule that when we go in this coming Thursday. Remember...I am not a patient person about things like this and why wait! Lets do the test and find out what we need to do.
Tuesday, May 08, 2001
Chris is doing well. Still can't bend over, and it is still hard to even get in bed by himself. He is walking as much as he can, but he is still SO sore and swollen. I had to return to work today and hated leaving him. But he was good...he didn't do anything he wasn't suppose to [grins].
It amazes us the size of our 'support group' already. Friends, family, people we both work with, people we don't even know. The love and prayers keep pouring in! I have to admit, both of us work for and with THE GREATEST bunch of people! Having a support group is SO important and comforting. We want to send a special Thank You to Kent and Jake and also all of the guys that work under Chris; and also Tara, Tracy, Clara...and ALL of the people I work with! You all are great and we love you all! What would we do without you all!
Chris is my HERO during the most difficult time that he has ever faced in his life. He is strong, and just his high spirits alone is a blessing. This Cancer just doesn't know yet 'who' it is dealing with...right! Kick the Cancer to the Curb, because we have faith, and trust in God!
Friday, May 11, 2001
Chris had his post-op follow up visit with Dr. Graham yesterday. Everything is healing "as to be expected". He has had a hard time the last several days, A LOT of pain in the scrotum and waking up every two hours during the night. He can't even sleep on his side now. We are now trying heat & ice, as well as getting in the jacuzzi (warm water, not hot) a couple times a day to try to help ease the soreness and pain. Of course, he was not released to return to work. Still no driving, no lifting, etc. During the last few days, he has 'bitten my head off' more than once [grins]. Something he would not do if he was not in pain, and scared! And it is not the end results that we are afraid of, being that this is highly curable. It is ALL of the in between (chemo, more surgery, etc.) that is scary! Chemo itself has a lot of things (side effects) to be aware of that can happen. Hair loss being the least of Chris's concerns!
No pathology report yet. We were told, and had hoped, that we would get the results yesterday. But Dr. Graham told us that they sent it off for a 'second opinion', that it IS non-seminomatous mixed germ cell testes cancer. Now they have to determine the percentages correctly! Which will majorly dictate his treatment choices. We were a little upset at hearing that it may not be until Monday before we get the final conclusive report. Another long weekend of waiting and wondering! Dr. Graham did say that if the CT Scan and the path report dictates him having the RPLND surgery that he would have to review it carefully. If it looks like it would be a complex surgery with many nodes involved, that he would definitely refer Chris to a more experienced surgeon. He said that he had only done approx 10 of these surgeries within a 5 year period! We appreciated his honesty up front (without us having to ask him) and him wanting to provide the best care for Chris. We ARE expecting some Chemo per Dr. Graham; we just don't know when, how much, or what kind yet.
Chris had his CT Scan today of his abdomen and pelvis. Of course, no results yet. He had to drink the 'barium cocktail' that was in a tall bottle. He said it wasn't too bad, like watered down milk. Then he had to wait an hour for that cocktail to circulate around in his abdomen. Once they called him in, they had him drink more barium, (that, he said, tasted bad this time), and they put the die in via IV. He said he could feel the 'warm sensation' as the die went through his veins. After the CT Scan was finished we were finally headed to get something to eat for Chris. Nothing to eat or drink for 6 hours prior to the CT Scan! He was thirsty, hungry AND in pain!
We have had a lot of emails asking 'how am I doing" (the wife)? Well...for the most part I am okay. Stressed is an understatement!!! Full plate? Again an understatement!! I am trying to work, keep the house going, save time for our teenage daughter and care for him, all at the same time! I feel like it is coming at me from ALL directions at once. It is hard to see Chris in pain and can't even get off of the couch without a lot of pain. He tried to describe the pain to me as...'just imagine squeezing a babies head out'...wellllll DUH!! imagine nothing....been there, done that! [grins] He laughed and said, 'yea I guess you know don't you'. It was one of those things that you just had to be there to sense how funny that was. In his pain he temporarily forgot we have 3 kids!! We laughed and was able to 'forget the pain' for a little while! Best thing for him right now, A LOT of laughter and what ever fun we can muster up!
Monday, May 14, 2001
Today we received the pathology report and the CT Scan report. Looks like it is 95% yolk sac tumor, 5% embryonal carcinoma. CT Scan indicates a group of enlarged lymph nodes located posterior and lateral to the abdominal aorta with the largest node measuring approx 2 cm.
Chris's doctor is now referring him to MD Anderson, (Ed's note: MD Anderson is not on our list of experts), to see a more experienced Urologist for a RPLND surgery. Looks like (from everything we have read on the web) that this upgrades him to Stage II. Chris still is ready to do whatever he has to do. At this time NO 'decisions' have been made as to exactly what that will be next. Needless to say, we are a little bummed out tonight, but that's to be expected I guess. We should find out tomorrow exactly when we go to MD Anderson to see the next doctor.
Chris's pain level from the IO surgery seemed to be a lot better today. He's tired and slept a lot today. The mental exhaustion from all of this took it's toll on him, and myself! For the most part his spirits remain high! The results of the CT Scan isn't what we had hoped for, but move on instead of looking back...right!
More updates as we know. Thank you ALL so much that has emailed Chris and myself with your stories, well wishes, and prayers! It means a lot to both of us and our family.
May 21-25, 2001
Chemo Round One- 'In-Patient BEP' 5 days at MDA: Chris slept a lot (if sleep and hospital can be said in the same time frame, they came in every two hours it seemed liked and woke him up...lol), since at that time his scrotum was still giving him a lot of problems and pain, plus the pre-meds etc was making him drowsy since he was not use to them.
He stayed in bed except to take a shower and bed changes. Only a low grade fever for a couple of days from the Bleo. Only actually threw up one time, after that they gave him nausea meds IVPB around the clock q6 hr, along with nausea pre-meds of Zofran and Solu-medrol IVPB 15 min before hanging Chemo each day.
He felt some mild nausea the rest of the time, and didn't eat a lot, but he managed great! He drank a LOT of water, juices, Sprite, Boost Plus, etc. to keep hydrated, along with them giving him a lot of IV fluids. The lung CT Scan was negative, no signs of TC in the lungs...YAY!
They did a Pulmonary Function Test before they started Chemo since the BEP can affect the lungs. They wanted it before so they'd have a comparison for later AND to make sure there wasn't a problem before giving the BEP.
Every day the Chemo regimen was....day 1- Etoposide that ran for 2 hrs, then the Cisplatin that ran for one hour, then the Bleo which ran for 24 hours. Days 2-5 were only the Cisplatin and Etoposide. They drew daily blood work every morning (Na, K, C1, CO2, Bun, SrCr) and on day 4 they did blood work (Mg god, CBC, Plat). He was on a regular diet and ad lib activity. Vitals were q4, etc...all were normal the entire time (with the exception of the low grade fever from Bleo).
They started him on the soda/salt rinse before they started Chemo...so far no mouth sores. He uses a soft toothbrush, a mild toothpaste, and the soda/salt rinse 4-5 times a day, along with brushing his teeth 3x's a day. He drank Boost Plus shakes (vanilla ice cream added) everyday whenever he wanted it for the added nutrition. He could order meals, snacks, etc anytime he wanted it from 'room service'. He was in a private room (all the rooms are private at MDA for patients on Chemo) and I had a chair bed that was fairly comfortable. The volunteers came in several times to see if we needed anything, and of course the Chaplain came in also.
When they admitted him, I asked to view the doctors orders (which the nurse had no problem with), and I wrote them all down in my day planner so I knew exactly what was ordered and when, etc. I think knowing that helped ME keep a close eye on everything they were doing. After that, his team of nurses just automatically told me everything they were doing, and they told me when any new meds (like the solu-medrol) was ordered. They had me attend CVC classes to learn to care for his CVC, and I had to demonstrate on Chris with the IV team watching me before they would discharge him.
Once I passed that, they delivered all of the supplies to his room for us to bring home. I requested a case of Boost Plus, a box of gloves, face masks, and blue pads (chuks)..all of which they sent home with us no problem. Our children and two of our grandsons came to visit in the hospital, and they did let the babies in to see their "PaPaw" for a short visit. That visit really lifted Chris's spirits!
I suppose most of our 'apprehension and fear' of the unknown of going into round 1 in-patient Chemo was as it turned out, a waste of precious energy! Everything went so calmly and smooth on Round 1 in-patient. Chris was certainly being watched over from above! And the Prayer Lines must have been heard and answered! Thank You everyone!
Monday, May 28, 2001
After 5 days of Chemo, and 8 prescriptions later...We are HOME :)
They have found a blood clot and possible infection in his left scrotum sac from his IO. They put him on a strong antibiotic, with the possibility of having to go back into surgery to 'clean up' the scrotum sac and relieve the pain and pressure there. He is still extremely sore, and he is still swollen and in PAIN from the IO. But hopefully, this will be taken care of tomorrow or the next day.
He is still in high spirits other than feeling tired. He is SO GLAD to be home!
We go back tomorrow for more lab work (blood tests) and to see the Oncologist team. Then on Wednesday we go back for Day 9 Bleo infusion that he will be sent home with.
Our first inpatient experience with MDA was very good. We were very pleased with the care that he received. We did ask about Dr. Einhorn. Dr Tu said that Dr. Einhorn use to practice at MDA and that he (Dr. Einhorn) received some of his training/studies at MDA, and that Dr. Einhorn discovered the Cisplatin to be effective for TC. He had nothing but praise for Dr. Einhorn and said that MDA uses the same protocol.
I will send more update news later, as we are tired and want to relax a bit and enjoy being at home. Thank you all so much for all of the prayers and support!
Tuesday, May 29, 2001
Yes, spirits are still HIGH, and determination is even stronger :)
He had a good first night at home until...about 5 AM when he started yelling at me to come quick. The sheets, and him, were bloody from where, while as an inpatient, they stuck him with what he termed as a 'cajun injector needle from hell' to remove fluids from the left testicle sac to send to lab for cultures etc.
It (the puncture site) bleed a lot in the hospital, but had stopped before he came home or naturally they would not have sent him home. Anyway...for some reason during his sleep it began bleeding again. SCARED the HECK out of us! After about an hour we got it stopped with 'pressure bandages'(yes we used sterile technique...lol). He had no fever, so we were able to avoid a trip to the MDA emergency room at 5-6 am...WHEW! He went right back to sleep afterwards, but of course I was WIDE AWAKE after all of that...LOL!
We WILL find out more about the 'scrotal problems' today while we are at MDA to see his doctors, etc. What a way to wake up huh!!
They have him on a strong antibiotic but has already said that they may have to take him back into surgery to clean up the blood clot and infection that is in the scrotal sac.
NO nausea since we have been home, so that IS good! :)
Wednesday we go in to begin Day 9 24/hr Bleo infusion. Then again on June 6th for day 15 Bleo infusion. Both Day 9 and Day 15 Bleo infusions he will complete at home they told us. (Unless he is having other problems.) So keep the prayers coming!! :-)
Wednesday, May 30, 2001
We ended up going on into the MDA Emergency Center yesterday for the bleeding scrotal sac. It started bleeding yet again, so we decided to get him on to the ER. Good thing we did!
Today he is a different man :)
His Urologist at MDA wasted no time...they opened the scrotal sac and let all that YUK out, and irrigated it real real good. They cut about an 1 1/2 inch incision and literally squeezed out big blood clots, etc (like a BIG ZIT)and man...did that ever smell BAD! You could smell the infection (or whatever it was, culture results aren't back yet)..it was awful!
They left the incision open and packed it. Now he has to soak in a warm bath 3x a day, and I have to re-pack it 3x a day (wet to dry packing) for him until it heals from the inside out. He never did run any fever with it, just a lot of pain and swelling! It hurt him pretty bad during the whole procedure in the ER, but today he is SO MUCH better. Like a new man! They have him on two antibiotics for it and he should be okay now real soon. We go back on Friday for a follow-up with his urologist at MDA.
We also started Day 9 of Bleo today. He has this real neat little 'self infuser tube' that runs off of his own body temperature. It will run/infuse until about 2 pm tomorrow, then I will disconnect it from his CVC, do the 2 syringes of saline and one Heparin flush and cap change, and he's done until next Tuesday.
So far no nausea, but they did give him his pre-meds (Zofran) IVPB for nausea before they hooked him up to the Bleo. And I gave him his other N/V meds when we got home. In the hospital the Bleo gave him a bad headache, and the one real sick day, and his eyes were sensitive to light, and a low grade fever. So far none of that, but the infusion hasn't been going for long yet either. I'll update tomorrow on how he is doing with this Bleo treatment.
Saturday, June 2, 2001
Chris is doing pretty well, although he woke up this morning with a bad headache and some diarrhea (both of which we read could be side effects of Chemo).
His check-up yesterday with his Urologist for a follow-up on his scrotal post-IO problem was good. The doc said it looks good! We were instructed to continue with the packings 3x a day for TWO more weeks and to continue the antibiotics. He has another follow-up visit then in two weeks with the Urologist, although he will be back in-patient status for his next 5 days of Chemo by then. The pain level in his scrotal area has improved 95%, although the packings are somewhat painful for him. BUT...he can now walk without looking like a Sumo wrestler..lol.
He felt GREAT for a couple of days, but today he is not having as good of a day today due to the headache, etc. that I mentioned above. Maybe he over did it... he is resting/sleeping today.
Sunday, June 3, 2001
Yesterday Chris was very 'tired'. He had two days where he felt great, and actually had 'cabin fever' he felt so good. But he would tire easily, rest, and was ready to go again. Maybe he overdid it because Saturday morning he woke up with a bad headache and said he just felt 'tired' ALL day. He had no energy to speak of. He tried to help me around the house a little, but he HAD to rest SEVERAL times. To me... he has started to look just a little pale already. Is this normal after only one BEP I wonder?
His appetite came back full force for the two days that he felt good, but today...nothing tasted good to him really again...except some popcorn! He normally LOVES grape soda, but said he 'can't handle that right now'...but orange soda tasted pretty good to him.
He's having belching type hiccups, and says it feels like there is air or something trapped in there that he just can't get up. It is driving him nuts! He said he seems to have noticed that if he eats small amounts of food MANY times a day, that it seems to help not have the belching hiccups as bad? It's not nausea though.
I hope he feels better tomorrow, I could really tell today that he was not feeling good, not like himself at all. BUT..it was great seeing him having those two good days!
He dreads his 'packings' that we have to do to the scrotum sac...and usually ends up taking pain meds afterwards. He says he knows that we have to do this but, that he is REALLY READY for this (the packings 3x a day and the pain) to be over with. He's had pain there for just a day shy of a solid month since his IO surgery on May 4th. He's SO ready to be pain free down there!! And at times he seems to me (although he won't admit it) to drift into 'lows' because of it (the pain). At a time when he needs ALL of the positive thoughts and high spirits that he can get for his Chemo. I know that pain can take a toll on you when it goes on for a while. Granted it is not AS bad of pain since the lancing done in the ER, but still pain none the less.
MANY people have emailed us saying that I am handling this all so well, that I am so strong, etc. Hell...I am exhausted!! Mentally and physically exhausted! Sometimes it is hard not to show my worry and down moods to him. And we still have a LONG ways to go before this is over :( But I keep going (only by the grace and help of God) because Chris really needs me right now.
Where I am getting the energy to do what I have to do MUST be coming from above!! Being here for Chris, AND facing our daughters surgery at the same time...it's NOT easy! Heck...I MISS my wonderful friends at work and miss being at work doing my job that I love! Every time I think, or plan on being able to go into work, we get hit with something else...another doctors appointment or something, and I feel so disappointed that my life too has been placed on this 'Cancer hold' that I can't even get into work. I would LOVE to have a day at work, just to hear what's been going on with all of them there and gosh...just to hear their wit and humor!
I didn't realize JUST how much this cancer would change our ENTIRE life as we knew it! Chris and I both seem like we can't wait for things to 'return to normal' again! It still scary just how fast things can change, and your life is upside down! Sometimes I want to CRY just because I see things going undone, like my house etc, that normally I could handle without a problem (people I work with can even tell you...even my desk is ALWAYS left tidy and neat at the days end). But I can't even keep up with the dishes, or laundry it seems... not right now! Dealing with this Cancer MUST come first! Chris getting well IS our life right now!
I guess today I truly realized just what Terra, a dear friend and co-worker, (I love ya girl!) meant when she said that she would NOT send me work to do at home, that she didn't want me to worry about that right now! Maybe when things settle down a bit here, maybe I can talk her into it...lol! Just to 'keep my mind busy' during times when Chris is resting.
I am trying my best to take care of myself too though, and give myself a few minutes of time for just myself everyday. Which at times is a tasks in itself. With the house, laundry, paying bills, etc ...well you all know what it all entails. It is NEVER all done! One day this past week I HAD to say to heck with the house work...I am just too tired..it can wait! I had no choice cause it felt like my body was locking down on me. So I did listen to my body and rested other than what Chris needed me for, or my daughter. And I paid for that day of rest by spending ALL day Saturday cleaning house...LOL! While being the caregiver for them...I also want to still find some time for our other kids (they are grown but we visit and talk most everyday), AND our grandsons! ITS HARD! The grandbabies come over and I am just too tired mentally lately to be my normal 'Mamaw' self that they are use to. But I DO still manage to steal some precious hugs and kisses! :)
I'm signing off on today's update now... good night everyone... here's hoping that Chris has a good day today. I want him to take it easy (it's Sunday after all... lol), and we have our daughter surgery to deal with on Monday bright and early.
Sorry to rattle on with this update..I just needed to 'unwind and vent' a few minutes and 2 am is just a little TOO late to be calling my friends from work... lol. Thanks for reading (listening)! Hope everyone is doing good, and keeping your spirits high!
Thank you ALL for the well wishes and prayers, we appreciate it so much. I'll update again after Day 15 Bleo treatment on June 6th. Please keep the prayers coming; and wear, AND place, those TC Purple Ribbons EVERYWHERE for Chris! And everyone else that is going through or have experienced TC!! The Prayer lines are working, let's get those 'TC Purple Ribbons lines' going to bind us ALL across the nation for one cause...KEEP CURING TC!!! God Bless.
Wednesday, June 6, 2001
Chris is presently doing his round 1/day 15 Bleo. It was hooked up around 6 PM yesterday and will run the 24 hours.
This morning he woke up with a low grade fever (99.2-giving him Tylenol) and a sore throat. I can tell he feels bad this Bleo treatment because he is still in bed, whereas normally he'd have been up along time ago. Day 9 Bleo went so well. It just goes to show it can be different each time.
His Onc visit yesterday was okay, ALL blood counts are still normal. Although he does have a rash under his arm, everything else the doc said was going well and he told us what to do for the rash. No hair loss yet either. His weight has been up and down, nothing major as far as loss. The scrotal packings are going okay, still painful (the packing process) but it is healing nicely now. ;)
We go back on June 12th to be admitted to begin round 2/5 days in-patient Chemo. Next week they are going to do his tumor markers again (which had raised in between the IO and beginning the Chemo), and after round 2 is completed they will do another tumor marker and CT Scan of the abdomen to see how well the Chemo is doing with the lymph nodes mass so far.
Sunday, June 17, 2001
Whew..home again! ;) TWO DOWN---Two to go!! Chris has finished his second round with mild side effects. No nausea! The only real occurrence this round was on the 4th and 5th days his blood pressure kept going up, then right back down to normal, and they watched that very closely. During the high B/P's he'd have some headaches.
This time his Onc doctor withheld the Bleo because his PFT was 10% lower and indicated a possible problem with his lungs. So this round was EP, not BEP. They will check the PFT again when Chris is admitted in 21 days for round three. If the results come back up, they will give the Bleo next time...if not...they'll continue to hold the Bleo and do further tests on his lungs for possible lung damage due to Bleo. GOOD NEWS though...his tumor marker (AFP) is down from 37 to 5! And his blood counts are still ok. White count was 4.02 when he was admitted on Tuesday, alittle low but still in the 'safety margin' per his Onc doctor, and no neupogen has been given. They are checking his blood counts every week.
He also now has a pimple like rash covering his back. He wasn't going to tell his Onc about it but I did. :) His Onc said YES he needed to know. They gave him some cream medicine for it to be applied 3 times a day.
The belching hiccups have also been greatly reduced with another RX of Prevacid twice a day. They tried everything from Mylanta, Maalox, Prevacid..til finally the Prilosec worked. Along with instructions not to lay down for an hour after meals.
The post IO scrotal problems are now HEALED! No more packings, etc...YAY! And Chris was thrilled to hear that no doubt.
We are still very pleased with MDA. The staff has been nothing but wonderful! And his Oncologist team seems to be really on top of everything, with compassion and individualized care to the level that one feels as if they are the only patient! And once again...the staff was way ahead of everything it seems. Like his home supplies, they had them in our room TWO days before we were scheduled to go home. And his meds...the same thing. Little things like this feels comforting to know that even their 'discharge planning' is so on top of everything. Will update again in a few days. Thank you everyone for the continued prayers and support.
Wednesday, June 20, 2001
Chris is very tired!! His joints ache and is beginning to get that 'pale' look and he just has no energy. We go back to see the Onc doctor Friday for his checkup. We are also looking at more tests being done on July 3rd (Chest X-Ray, CT Scan, Lab Work, etc.) to see what progress the Chemo has made after two rounds. We are hoping we get a 'clean report'...wouldn't that be wonderful.
He has had no nausea at all after round two. Right now it is just hard seeing him so tired, I am here to help him. I was planning to go to work again tomorrow (Thursday) but when I got home yesterday he was so tired. So I plan to stay home with him and make sure he is eating good and resting. It's hard going to work when you have someone at home going through Cancer and Chemo. Things can change from day to day. One day they can feel great, the next day they can't hardly get out of bed. Yesterday was one of those days for Chris.
Friday, June 29, 2001
Just when you think things may be okay...all sh*# comes down on top of you. Just to give you an idea of how heavily EVERYTHING can weigh on you while going through Cancer and Chemo, imagine getting laid off from your job during the process.
Well that's exactly what happened today. I (the wife) got laid off. And remember...Chris has NO disability insurance! So we are screwed and tatoo'd!!!!! One day we are counting on the words from my boss 'don't worry about your job, take care of your family' and the next day we are literally worried about being able to keep a roof over our heads. And stress is NOT good for Chris right now during his battle against Cancer. My nerves are shot totally to hell and back!!!!! I honestly don't know how much more I can handle. No one is going to hire me knowing that I will have to be taking off to take care of my sick husband. Unemployment line here I come.
Oh..but our day was even worse than that too. We lost our dog today also. Tiger passed on last night sometime and we found him this morning. Chris loved his dog and was very upset. Losing a 'family' member (Tiger was not just a dog, he was a member of our family to us) just adds to the hurt of an already bad time in our lives. Rest in peace Tiger, we love you!
Other than the emotional roller coaster of this day, Chris is doing okay. He's tired a lot and still has the pimple type rash on his upper torso. He's experiencing some swelling in his legs and ankles that we have to inform his Onc doctor about. Swelling is an alarm that the kidney's may be having some trouble. Hopefully not!
We go for a 're-staging' test on July 3rd, and he is scheduled to be admitted on July 6th for round 3 Chemo. The re-staging tests will aide his doctors to decide if he needs one more round of Chemo or two, and if he needs the RPLND surgery, etc. once they see how the mass in the lymphnodes is re-acting to the Chemo.
We are very bummed out tonight, and very worried now. It's so hard to stay in good spirits when facing Cancer treatments, but having to worry about financial aspects makes it even harder to stay positive.
Tuesday, July 3, 2001
Things went from bad to worse again today. I do not qualify for unemployment! What that means is that to literally 'keep a roof over our heads' I have to find another job ASAP. And that means that I won't be able to be with Chris all the time like I have been.
For example: he'll be admitted July 6th for 5 days inpatient Chemo Round 3, and Kay will be job hunting. I have no choice, WE have no choice! And that's upsetting. I don't want Chris going thru that alone. But he understands and agrees, we have to face up and do what we have to do to stay afloat.
I won't even be able to go visit him everyday in the hospital because of the gas and parking expenses, etc., that we just can't afford now. But you can bet that I will be calling him every night and he'll KNOW that I am right there with him in heart and spirit!! I personally don't give a damn if we loose every 'material possesion' that we own, as long as Chris gets well and we remain together! Material stuff can be replaced, my Chris can't.
He goes for re-staging tests tomorrow. I will update again when we hear something about the re-staging tests. Pray for Chris, for them to say that a miracle has happened and the TC is completely gone! We can still hope...
Friday, July 6, 2001
Chris got the results of his re-staging tests today, July 6th, and it was part good news part bad news.
I'll start with the good news. His tumor markers are normal. That means that the Cancer is not growing. The Chemo has stopped it from growing any larger. His lung function test had decreased 10% after round 1 but has gone back up 5%, so they are taking the chance and going ahead with the Bleo this time. That means that yes, it improved, not back to what it was but at least some, so that's good. His blood counts are all still normal, which is 'amazing' according to his doctors. There is still no signs of Cancer spreading to the lungs or any other major organs, which is GOOD news. And he actually gained weight, and that's also good they said.
Now for the bad news. Originally they had hoped that the Chemo would shrink the tumor down to nothing, and avoid him having to have the RPLND surgery. Not the case exactly however. There is a 'cluster' of tumors if you'll remember. The largest one being 2.0 x 1.5, which is the one that is pressing against the main aorta in his abdomen. After two rounds of Chemo (1BEP, 1 EP), that largest tumor is now 2.0 x 1.0, meaning that it only shrunk by .5. "Not a significant enough amount" they told us today. End result, he WILL have to have the RPLND, no two ways about it. And with the tumor still being that large against the aorta, it will be a very risky surgery, which is what they were trying to avoid all together.
He is in the hospital again right now for round 3 of Chemo. They decided to risk it and go ahead with the Bleo this time even though his lung test had not returned to complete normal (normal before any Chemo). They explained to us that the risks is that there could be more irreversible damage to his lungs, but they HAVE to give it to him to still TRY to shrink this largest tumor as much as possible before the surgery to try to get it off of that aorta. The next bad thing about all of that is...quote, unquote from his doctors "they have to risk more damage to his lungs to help save his life".
After round three, they will do another Cat Scan to see if it possibly shrunk it alittle more, or not. If it doesn't, that means that "the Chemo has done all that it's going to do and there would be no sense in keep poisoning him with Chemo", and surgery will be the next step. If it has shrunk more, they will consider a round 4. 4 rounds is the Max that they will do regardless, the surgery is just a matter of time now. It will have to happen, we know that already after today.
Our hopes of being told that he was totally done and all well was shot out the window today. It is FAR from over! But the final outcome still remains good. They are still saying upper 90% cure chances. It just means that he has A LOT more to go through to get there. And all of it has high risks!! The surgery alone they are telling us that he will be on the operating table 8 hours, 7-10 days in the hospital and 3 months recovery time. Then 2 more rounds of 'clean-up' Chemo after that. We don't know exactly when the surgery will take place. Sometime in August we calculate. (Editor's Note: While I feel that this surgery is probably necessary, I think the doctors are being a little melodramatic and pessimistic in their discussions with Chris and Kay. This surrey is not simple, but TC usually goes to this area and to the aorta, and it is not THAT high risk. It will probably not take 3 months to recover, and most people get out in less than 7-10 days. Also, the statements above above deciding to stop or continue chemo based on shrinkage of the mass are not a standard practice. Ideally they should know the number of cycles he needs at the start, and just stick with that. Whether or not it shrinks at this point may have nothing to do with the chemo.)
He was bummed out tonight, but I know him. He'll bounce back with his same amazing positive attitude as always. My self, I'm doing my best. I can't 'be with him' like I had been before and that upsets me. I just can't bare that he is there going through round three Chemo alone. But he knows that I am right there with him in heart and spirit. That's not the same thing as being there for him when he's sick from the Chemo drip or needs something else done for him though. But I'm strong, he's even stronger...things WILL be fine! RIGHT?
Wednesday, July 11, 2001
Chris had a rough time during round 3 (5 days inpatient). He had N/V (Nausea and vomiting) everyday despite the nausea meds. I guess the more Chemo, the harder on the body. Other than the N/V he did good. Blood counts are still good.
He goes back Friday (the 13th) for more blood work and Bleo. Right now he is just tired and glad to be home again. Will update more after the day 9 and day 15 Bleo.
Saturday, July 14, 2001
Round 3/ Day 8 Bleo went well. No nausea, no fever. Just alittle tired and 'cabin-fever'.
His blood counts dropped so they have put him on the Neupogen injections now. So far, after two injections, he has had no problem or side effects from the Neupogen. No bone pain.
His kidney function blood tests were high Friday. So they strapped a large bag of IV fluids on him to hydrate his kidneys. We brought the IV fluids home in a big backpack with a little infuser pump in it. It infused for 10 hours and then I disconnected it here at home. It was bothersome, but uneventful. No problems. He has to drink more fluids! They are having him go back on Tuesday to check the kidneys (blood tests) again.
His magnesium was also alittle low, so they put mag in the IV fluids and he is now taking OTC magnesium twice a day.
He is planning to go into work Monday - Thurs next week. No more N/V since Thursday. Now we wait for day 15 Bleo on the 20th. Round 3 (21 days) will be completed on the 27th. It is obvious that round 3 has been the hardest on Chris. We are hoping that round 3 will be the last one. From the beginning they told us 3 for sure, maybe 4.
Wednesday, July 25, 2001
Chris has completed round 3 Chemo (2BEP, 1EP) and is doing outstanding! He says he feels great. He is going to work, although he's not quite up to working a full day yet. The heat drains his energy fast, BUT the mere fact that he is doing so well amazes everyone. He has had absolutely no nausea after his round3/day 15 Bleo.
Now we wait for his Oncologist team to gather a consensus of calling it done at 3 rounds. If they decide that no more Chemo should be given, he will be referred back to his Urologist for further options (RPLND or not).
Right now Chris is looking forward to the more 'simple things', like getting his hair back (LOL) and getting the CVC out of his arm so he can take a 'real' shower. IF he has the RPLND surgery, it won't be done for at least a month (probably longer) so we are planning to use this time to enjoy some resemblance of 'normalcy' again...while we can.
Myself? I am relieved and very thankful. I'm not nearly as scared as I was in the beginning but, I realize that this will be a part of our lives for quite awhile longer. 'Acceptance' of Cancer is a hard thing to overcome, and I'm not sure that acceptance is the right word. But in my heart I had to accept that Chris has Cancer to fully get in that 100% positive, supportive mode. And even then...many times the 'anger' inside about Cancer crept in without warning. At the moment...I can honestly say that I AM a better, stronger person inside because of this Cancer, and because of Chris's strong determination...and I will cherish each day that God blesses me in allowing me to keep my Chris here with me.
It's not over by far, but it sure feels good to hope that at least Chemo is done. We could not have made it through all of this without all of the support, prayers, and emails that we have received. The words 'Thank You' just doesn't seem like it says enough.
A special Thank You to our family and friends! Thank you to all that lent an ear, listened to me cry, and held my hand. Thank you to ALL of the "new friends" that we have made, that we would not have met had it not been for Cancer Support Groups. Thank you to the wonderful nursing staff and team of Physicians at MDA. Thank you Doug at TCRC for all of your wisdom and support, and for posting our personal story so that it might help others in someway. And most of all...Thank You Jesus!!!
I will update again after we hear from the Oncologist team regarding his next options / next step. May God Bless each and every one of you!!!
Saturday, July 28, 2001
Chris's team of Oncologists decided it was best to go with the 4th round of Chemo after all. The reason was that he only had the Bleo on round one and round three. They said he needed either 4EP's or 3 BEP's. Stopping at round 3 would have been 2 BEP's and 1 EP. They didn't feel comfortable with stopping with that. It wasn't the news that we had hoped for but...gotta do what we gotta do right! So he went yesterday expecting to be admitted for another 5 days of inpatient BEP. They did the pulumnary function test and it was 10% low again after round 3, so again the Bleo was ruled out. We talked them into doing this 4th round (EP) as an outpatient...YAY!! He had his round 4/day 1 EP this morning and came home with a bag of IV fluids to flush the kidneys, and is feeling great. :)
4 more days to go, then a couple of follow-up visits, and as soon as his blood counts and eveyrthing is okay after this round, they will take the CVC longline out.
Then we wait at LEAST 4-6 weeks for maybe a RPLND. They won't say for sure until then and until after they do another CT Scan, etc.
Even tho he's having to do the 4th round, there is still a bright light at the end of the tunnel!! :) Only 4 more days of Chemo to go!!!!
And he is enjoying being in his own house this time, I wish we had talked them into outpatient all of the other times, but hindsight is a lesson for the future. :) Yes it's a pain to drive up there, sit for 3+ hours of Chemo, then drive home...but for anyone else just now starting the long road of Chemo out there, please listen to Doug and eveyone else...outpatient is so much better!! IF he's going to be sick, at least he'll be sick in his own bed, in his own house, this time! And he says it sure feels good to be able roam around in his undies at his own will, and NOT be woke up all night long. LOL!!!
Tuesday, August 7, 2001
It's been a long road to this day ;0 The CVC longline was removed today....
Round 4 (EP) went fair. He took the 4th round hard, N/V everyday, and is STILL having the N/V everyday a week later. His red blood count was low today, thus explaining him being so tired. His Onc. doctor told him to rest a few more days, and the numbers would begin to return to normal and he'd get to feeling better and better each day.
Other than the RBC count being low, everything else looked pretty good. They told us that overall he did quite well with Chemo. A lot better than some. And we are thankful that he had strong courage and determination. He's getting pretty tired of being sick and tired now though. Just ready to get back to his normal self 100%.
Now we wait to see the Urologist again to discuss the residual mass in the lymph nodes. Until then...a lot of rest and relaxation (taking deep breaths that Chemo is over) ;0
On top of the Chemo being over, things are looking up for us in other areas also. I've landed another job, and as it turns out, I am making more than at the job that laid me off! :) Chris is able to see an end to the this in the near future, the kids are all healthy, and financially things are going to be okay also...LIFE IS GOOD!!
I Never thought that the one word 'NORMALCY' would mean so much. But after finding out how quickly CANCER can take that away and turn your life upside down, it is a very important word with SO much meaning to us. And you learn to take the good days and RUN with them, and cherish them!
I STILL say that Chris is the most amazing man to me. HIS courage and positive attitude during this has been MY guiding light. Even being sick, he was my sense of support and hope in a nut shell. Seeing his positive attitude was my strength!! And we truly believe that keeping a postive attitude, A LOT of laughter whenever possible, and faith in God is SO important in fighting this, or any cancer. NEVER GIVE UP!! And take one day at a time!!
I Will update you again after we know something from the Urologist (4-6 weeks we assume is the time frame still). God Bless all and take care until then...we are off to enjoy some 'normalcy' again while we can!
One more note...we love you ALL at TCRC! Thank you all for being here for us. ;0 And a special Thank You to Doug for putting up with and helping me!
Friday, August 31, 2001
Chris has been enjoying the rest from Chemo. He had a really hard time after round 4 with the N/V and was extremely tired, but now he is doing MUCH better. The weather here has cooled off for a few days now, and that seems to help him not get tired so quickly. Still no hair though. :)
He meets with his Anesthesiologist today. His RPLND is scheduled for September 18th, pending his pre-op tests are all okay for surgery. They are also taking a couple small nodes out of the pelvic region that showed up on the last scan to get a path report on those too.
We just keep saying our prayers that there won't be ANY live cancer cells anywhere. The tumors haven't shrunk anymore, BUT they haven't grown either. And the tumor markers are all still normal. All we know is that Chris wants this out of him, and get on with life. He's nervous about the surgery but still has that same positive attitude that eveything WILL be okay.
I'll update again after his surgery.
Tuesday, September 25, 2001
Chris had his RPLND on the 18th and the surgery went well. No problems in surgery. They removed all of the lymph nodes in the left abdomen and pelvis, and found some on the right that did not show up on the CT Scans. They removed those as well. He was in surgery for about 5 1/2 hours, and then in PACU overnight for recovery before being moved to his room. They gave him an Epidural which stayed in for 3 days, then they put him on Morphine via pca pump. He had some problems with his bowels sounds/activity but after they d/c'd the morphine baseline, he bagan having some bowel sounds. He got alittle congested, so they also had him doing respiratory treatments.
They had him sitting up the morning after surgery, and walking that afternoon one lap around the nurses station. He had the gastro tube in his nose for a couple of days which irritated his throat. He also had a main line in his neck, something like the cvc longline he had for the chemo, but much smaller, for all of his IV fluids. He did not get to eat ANYTHING from Monday night at midnight the 18th until Sunday when they started him on clear liquids. Not even ice chips. It was as a precaution since his bowels did not want to wake up. They definitly did not want him nauseated. He had the thigh high TED hose as well.
He is swollen and his abdomen is distented and, of course, he is sore and hurting but glad to be home and glad the surgery part is over. He did say that it was the "hardest part so far of his TC treatment". His message is "it is definitely no fun". The morphine made him very irritable, which they said can be a 'side effect' of morphine in some people.
The preliminary frozen sections showed a clean cut margin, and they are very optimistic that they 'got it all'. But of course we are still waiting on the path report. He goes back on Friday to get the staples out.
So 7 days later he is home!! With orders of NO heavy lifting, no driving, etc... for at least 4 weeks. Walk a minimum of 4 times a day, and eat whatever he wants in small frequent portions. The only medication they sent home was Vicodin for pain (but they gave him Cipro for infection via IV after surgery).
I will update again when we get the path reports. We are praying that it comes back good and no more Chemo will be needed.
God bless you all, and God Bless America!!
Friday, September 28, 2001
Oh my God, what do I say?
YAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!! NO CANCER ANYWHERE!!!!!!!!!!!!!!!!!!!!!!!!!! We both cried and smiled from ear to ear. That smile on his face was pricelss!!!!
All of the lymph nodes were clean, not even teratoma. My brain is so scrambled right now I can't remember what they said the tissue that was removed was. But the path report came back no malignant cells found!!!
No more Chemo!!!!!
He goes back in 4 weeks for his post-RPLND checkup, and to see his Oncologist to setup his 'checkup' course plan.
They removed all of the staples today and applied steri strips. He said it stung like heck, and a few spots downright hurt. But now he just has to relax and recover from surgery. Once he does that he can begin getting back to his everyday normal life.
NORMALCY!!! What a beautiful word!
Chris is a TC survivor!!!!!