History

June 2011 Steve noticed a lump on the right side of his neck and asked me what I thought it was. I stated I don't know but I think he needs to have it checked out. That night when we went to bed I couldn't sleep thinking about it and wondering what possibly could be going on. So I got up and went to the computer and goggled lump in neck and fatigue. Yes he has been fatigued for several months now and I have suggested maybe he needs to have some blood work done. Steve stated he works manual labor and that is why he is so tired. I agree 100% he works really hard and he hasn't had a break but I reminded him he is still on 32 years old. And as most men and some women do he brushed it off. So as I was stating I goggled his symptoms and what pops up LYMPHOMA. I started reading about Lymphoma and here are the most common signs and symptoms:
*Often, the first sign of lymphoma is a painless swelling in the neck, under an arm, or in the groin. (Steve has 2 lumps on the right side of his neck)
*Lymph nodes or tissues elsewhere in the body may also swell. The spleen, for example, often becomes enlarged in lymphoma.
*The enlarged lymph node sometimes causes other symptoms by pressing against a vein or lymphatic vessel (swelling of an arm or leg), a nerve (pain, numbness, or tingling), or the stomach (early feeling of fullness).
*Enlargement of the spleen may cause abdominal pain or discomfort.
*Many people have no other symptoms.
Symptoms of lymphoma may include the following:
*Fevers
*Chills
*Unexplained weight loss (Umm..my sister asked me if Steve was feeling well a couple weeks ago because he looked tired and like he has lost some weight.)
*Night sweats (YES...he has woke up several times in the past 5 months periodically complaining that he is sweating.)
*Lack of energy (YES=fatigue)
*Itching (up to 25% of patients develop this itch, most commonly in the lower extremity but it can occur anywhere, be local, or spreading over the whole body)

I think my heart stopped for a minute after reading this and realizing Steve has 1 sign and 3 symptoms of Lymphoma. That night I laid there watching the clock waiting for 8:30 to come so I could call and get him an appointment. First thing that morning I was on the phone to Dr. Gee's office making an appointment for Steve and explained I would like a full panel of blood work because he hasn't been feeling well.

July 7, 2011-
Me: "Steve you have to fast this morning for blood work."
Steve: "Really what will it hurt if I just eat a little."
Me: "If you aren't going to fast your wasting you time going."
Steve: "Alright, relax I won't eat."
Me (as he is walking out the door): "Remember to tell them I want a full panel and let them know how you have been feeling."
Steve: "Bye, I love you."
(I sensed a little sarcasm in his voice. Yes I am a LITTLE over protective.)

An hour later Steve calls.....

Me: How was the Drs?
Steve: Good
Me: Did they run a full panel?
Steve: Yep, plus some.
Me: What did he say?
Steve: "I look good but he is going to send me to a DERMATOLOGIST to look at my neck."
Me: "WHAT a Dermatologist?"
Steve: "Well while I was talking to him he said he wants to get it checked out by a specialist like an ENT (ear, nose and throat) but they gave me an appointment card with an appointment on Tuesday at a Dermatologist."
Me: "Steve turn the card over is there another name on it?"
Steve: "Oh yeah!"
(They gave him the Dermatology card because it had the address since they are in the same building. But he missed that minor detail.)
Me: "Okay well I am going to call the ENT that Logan went to since I liked them. So what else did he say?"
Steve: "Nothing really, we can talk more when I get home from work."

Later that night at dinner I asked if he had stated what he thought is was and he said,
Steve: "Worst case scenario, M something."
Me: "Melanoma"
Steve: "Yeah I think so."
Me: "That is a form of Cancer! Also did you tell him about the night sweats?"
Steve: "Nope I forgot, but guess what I have lost about 7 pounds"
(Not what I wanted to hear.)

Okay lesson learned I will be attending all further appointments with my husband. I realize unless you work in the medical industry or have a medical background this can be all to confusing.

July 12, 2011-appointment with ENT

First I must say we have the most amazing ENT clinic......
No wait, they got us right in and back and asked what symptoms Steve was having. When he indicated he had some lumps on his neck (approx 4 now) she quickly examined and asked if he was having any night sweats, fatigue, weight loss, or problems eating. Steve replied. "yes, yes, yes and no". Next she stated I definitely don't like the way this one by your collar bone looks so I am sending you for a CT scan ASAP. She did indicate that it could possibly be an infection but with the lump by the collar bone she was concerned. They schedule Steve for a CT scan first thing at 8:00 the next morning.

July 13, 2011

Steve had his CT scan this morning and by 1:00 they called and stated that it didn't look like an infection and they wanted him back in there at 4 pm today for a needle biopsy. Steve called me to tell me and I could hear the fear in his voice. As I tried to talk and ask questions he stated, "I don't want to talk right now I will call you back." The kids were both down for their naps and I was trying to get some work done and I broke down. I called my mom bawling and stated how scared I was and how worried I was about Steve because he didn't want to talk. I quit working and just sat on my couch and cried. I couldn't take it anymore so I called him back and asked if he was coming home and he said he didn't know. About 30 minutes later he pulled up. We got ready for his appointment packed up the kids and took them to his parents. Sitting in the waiting room he said, "What can I do to get this out of my body? I will do anything!" My heart broke listening to him as I tried to tell him to stay positive and that whatever it was we were going to get through it. When they called us back they explained that the CT looks abnormal and they are concerned that it is some form of cancer. Next they went on to explain the billion types of cancer it could possible be but they were leaning more towards Lymphoma. They also mentioned the possibility of Sarcoidosis which has very similar symptoms but its not as common as Lymphoma. Next they completed the needle biopsy and explained that this doesn't always tell them what they need to know so they needed to schedule for a excision biopsy just in case and if it did give them the information that we could cancel the surgery appointment scheduled for the following Friday July 22. As we left the clinic that afternoon it really hit Steve and I on what we were up against. Driving to pick up the kids we cried the entire way home scared of what could happen or what was ahead of us. The one statement that will stick in my head forever that broke my heart more then anything was Steve saying he didn't want to die and leave me and the boys. Is this really happening to us???

Friday July 15, 2011- We received the call from the ENT and just as they had suspected the biopsy was inconclusive and Steve would need to go ahead and proceed with the excision biopsy the following Friday.

That weekend we decided to take off and go camping to try and relax and clear our mind...not sure if it worked because there is a lot of sitting around and enjoy the clear mountain air which leads to a lot of time to THINK. Anyway the kids had a blast so it was great time spent together.

Friday July 22, 2011- At 7:30 am we checked into the hospital for the biopsy and Steve was pretty nervous since this was his first time EVER having surgery. (Did I mention he has always been an very healthy individual with the exception of minor acid reflex?) As I was saying we checked in and they called us back to start prepping Steve for surgery and while they were weighing him they asked how tall he was and he replied, "5-12". The nurse just sat there and stared at him for a minute then replied, "it is a little early for this" then we all started laughing. I am so glad he can still find humor to get us through this. As he was laying there waiting for the anesthesiologist to come and get him Janis walked in. Janis was the Physician Assistant that we first saw at the ENT office that ordered the CT scan. She is amazing and Steve was so relieved to see her there. After surgery she came out to talk to me and told me how well everything went and that the nurse stated Steve has to be one of the easiest patient to take care of. When Steve woke up from anesthesia he did complain that he was having a lot of neck pain but other then that he doing great. Later that day he was home and back to himself cutting the grass and playing outside with the boys....what a trooper!

What a long holiday weekend (non-Utahans this is pioneer day for us) it was waiting around praying for the best and at the point it was for this to be Sarcoidosis...who ever thought we would pray to be diagnosed with that? But it sure sounds better then cancer!

July 27, 2011 @ approx. 7:00 p.m my phone rang and it was the ENT and our emotions changed instantly from proud parents watching their 3 year old play soccer to two scared individual about to find out what direction their life was about to head. After about a 20 minute phone call with the ENT I hung up the phone faced my husband and he knew exactly what I was going to say..."babe just like they suspected you have Lymphoma and to be more specific Hodgkin Lymphoma type Nodular Sclerosis." We sat at the soccer field for about a half hour after the game just trying to comprehend what they just told us. Once we got home and I put the kids to bed I got on the internet to do a little research on the specific type of Lymphoma Steve had been diagnosed with and was very surprised to find that this is thee most common type of Lymphoma diagnosed (80%) and it has the highest success rate for remission or to be CURED! (sign of relief)

July 28, 2011 Steve had his post op appointment with the ENT to check his incision and to go over any question Steve or I may have in regards to his diagnoses. During this appointment the doctor explained to us that yes this is cancer and very serious but it is a very treatable cancer and it can be cured. Next he referred us the a medical oncologist for the following Monday to start the endless test to determine stage and course of treatment. I cannot express how thankful we are for Janis and Dr Gilbert they have been fantastic throughout all of this and worked so quickly to get us the results we need so we can get Steve better as soon as possible. During all this time I have done hours of research and was surprised at how many people in this same situation was missed diagnosed for months then had to wait several months for all the testing be to completed to determine their diagnoses. This hasn't happen to us once since day one when Steve went to Dr. Gee!!!

August 1, 2011- Today we meet with the medical oncologist and she was very positive and stated to us, "Steve I will cure you!" This means the world to us since doctors don't use that term so openly when dealing with cancer patient. She also stated, "if you have to get cancer this is the one you want." I can't tell you how many times we have heard this since Steve was diagnosed. After a through exam and complete review of Steve's previous test results the oncologist did state that she thinks Steve is a stage IIB (stage I and II early stages and 3 and 4 advanced; the B indicates he has active symptoms which usually indicates the Lymphoma is progressing) but until we have the PET/CT scan and bone marrow biopsy she won't be able to tell us the exact stage. Next we discussed the type of Chemotherapy Steve would more then likely be receiving which included the potential side effects and long-term risk. Last they scheduled us for multiple test...
Tuesday: Echocardiogram and Chest X-ray
Wednesday: Chemotherapy Education class
Thursday: PET/CT Scan
Friday: Bone Marrow Biopsy...OUCH, Steve did not like this!
Saturday: Andrology Lab...this is just in case we decide we want more kids. What an experience this was. All I can say is we got a good laugh at of this and we needed a good laugh!
Sunday: BREAK..thank goodness.
Monday: Andrology Lab again!
Tuesday: PFT to check his lungs.
Wednesday: Andrology maybe and tentively schedule for first round of chemo depending on all the above test results.

Now that I have everyone caught up on what has been going on and where we are at in this process I will try to update the blog once a week to keep everyone informed. Steve and I would like to thank everyone for their love and support during this challenging time. Sorry if we haven't responded to your calls, emails, text, etc. But we are just trying to get through all this to get treatment started so Steve can start feeling better. Up until about 2 weeks ago he only felt tired but it is definitely starting to take a toll on him with the lack of sleep and discomfort he is starting to feel. Overall he is staying strong and eager to be back to his HEALTHY outgoing self.

Thanks again for everything everyone has done for Steve and our family!

Love Steve and Angie