I had my last chemo 2 weeks ago....it's nice to feel normal for a change and not to worry about feeling cruddy due to the chemo again :) This is the first Monday that I haven't dreaded in a long time!!! We met with the radiation oncologist last week and he did recommend radiation. However, my labs were too low for him to let me start. So I took Neupogen shots for 3 days to bring my white count up. Unfortunately 3 shots wasn't enough cause my lab work on Friday still wasn't good enough. So I got 3 more shots over the weekend and luckily today my labs were better. So I got the call a couple hours ago that I get to start tomorrow. I'm glad it worked, the Neupogen shots make your bones ache so I really wasn't fond of the idea that I would need to have more!! I'm excited and nervous at the same time. I'm ready to get this done so I can move on with life! I have to have 17 treatments but I go everyday Mon-Fri so hopefully by the middle of November I'll be done with it all. They say I shouldn't struggle with being sick during the radiation; just tired and maybe a sore throat and difficulty swallowing. I'm pretty sure I can handle that....we'll see how bad it really is though cause I'm sure like anything else it's different for everyone. I've been told it's nothing compared to chemo so I'm optimistic! The plan is to do the 17 treatments, have another PET scan then meet with Dr. O'Dea again. I hope at that time I'll be in remission and I can just do regular check ups.....keep praying, it's working!!!
I'm so sorry I haven't updated in awhile. Guess I thought nobody was following here but I was wrong!!
Last time I updated I thought my last chemo was scheduled for August 1st....I was SO ready to be done.
Unfortunately we misunderstood what the doctor meant by 4 cycles...1 cycle is equal to 2 treatments therefore 8 total sessions of chemo. Make sense?? It was a HUGE disappointment when we thought I was done only to find out I was only halfway there!!! Now I've completed 7 chemos and my last one is scheduled for Monday!!! I had my PET scan and praise Jesus it came back with no evidence of lymphoma! They still made me finish my 4 cycles due to studies showing that people who complete that minimum have lower rates of relapse. And I'll still have a PET scan after Monday's session to recheck. Each round has still been very different. I still struggle with headaches and nausea but for the most part I push through and by Friday after my session I feel better. My labs have all been stable, low but stable. They still monitor them but have said they won't delay chemo due to that alone. I'm on several medications to keep myself from getting viruses or infections. Funny how one can go from not even taking a multi-vitamin to having a baggie full of medicine!! I struggle with the fear that I'll relapse.....I suppose that's something I'll always deal with. I hate living in fear but the thought of having to relive this all over makes me absolutely sick to my stomach. I have a new respect for those that have battled cancer, it's truly something that you cannot understand unless you've experienced it.
I'm so incredibly fortunate for the amount of support shown to me throughout this ordeal. My sister in law and cousin have gone together to design a "Fighting for Jamie" shirts with the proceeds going to us to help with expenses. Another friend designs bottle cap pins/bows/magnets and has done the same. Along with the meals, help with kids, and prayers I'm overwhelmed by how much love has been shown to us. And my family.....I can't say enough as to how lucky I am to have them.
Obviously each round of chemo is going to be drastically different for me. Round one....horribly sick and tired, related it mainly to an allergic reaction to one of my anti-nausea medications, better with a liter of fluid. Round two....not bad just tired. Round 3....complete with an ER for a severe headache, lightheadedness and nausea along with tingling of my fingers and toes :(
I had my chemo a week ago, went fine as usual. Felt great on Tuesday and even Wednesday, tired but not bad. Thursday morning I woke with a horrible headache, struggled all day with it. Alternated tylenol and ibuprofen and even did a little soft tissue massage and heat therapy with our pt here at work. Helped a little and I managed to make it through my work day. Worsened throughout the evening and after 2 hours of feeling pukey and crying I broke down and called the on call oncology nurses. I'd hoped they'd order a liter of fluids that I could do and feel better. Unfortunately she thought it was necessary that I be seen so off to ER we went. Thankfully the dr. and nurses were very understanding and were quick with running their tests and doing exams. CT, c xray, labwork all returned fine, my white count is even up to 2.1!! Still at risk for infections but not as bad! A little of morphine for my headache and a liter of fluid and I felt much better. I was actually able to rest. Unfortunately when they took my vitals to send me home my blood pressure was only 74/48...YIKES!! So the dr ordered another liter of fluid and said if it didn't come up to at least 90 they'd have to admit me. I was thrilled when my blood pressure was 91/63...barely made it but I was headed home!! Only to get to the parking lot and find our car had a flat tire.....at this point I was just ready to be home. 5 am we finally got home and crashed!!
A new side effect has hit me...my fingers and toes are tingly. You know that annoying tingly prickly sensation ya get when your feet are asleep??? It's super annoying and unfortunately I'm told that could last months after my last chemo session!!
I finally broke down and shaved my head on Friday afternoon. After showering and having 2 clumps fall out I was ready. I'd struggled with when to shave it and cried every morning while doing my hair and this was the last straw. JR shaved while I sobbed....dried it up then moved on. It's so much easier.....it takes me about 15 minutes to get ready now, showered and out the door. Quite the change from having to dry and straighten my hair which usually took a good 30 minutes alone! So I'm sporting my cute little hats and do rags!
My last round of chemo is scheduled for August 1st with my PET scan scheduled for the following week. I'm almost done.....hopefully :) Thanks for the continued thoughts, prayers and kind words. I have no doubt those are what are getting me through. And a special thanks to my family for being so wonderful....especially my husband who has been my rock.
Sorry it's taken so long to update....no excuses, I've just been lazy.
My 2nd round went much better!! I didn't take my Compazine this time so I'm not sure if that made the difference of if it was not as hard on me. Either way I was tired and had a little nausea but not near as awful as the 1st. My mouth got pretty sore again but this time I was prepared with the different mouthwashes they gave me! This round of chemo was only 4 hours cause I didn't have the trial and all the education that went with it so that was nice that it didn't take the entire day!
I have labs drawn weekly to check my blood counts and make sure that the chemo is not only effective at killing the cancer cells but also not depleting my healthy cells too bad. My red blood cells and platelets have stayed steady but unfortunately my white blood cell count had plummeted. I'm very low which means I'm at risk for not being able to fight infection. As a preventative measure they've put me on anti-virals and antibiotics for an entire month. Funny how one goes from not even taking a multi-vitamin to having a baggie of medicine :) In addition I've been wearing a mask at work and been even more careful about washing my hands and using sanitizer. Luckily I'm pretty anal about hand cleansing anyway and constantly stress it at home!
I've had a few days that were emotionally trying. My hair has started to thin pretty bad. Fortunately I have super thick hair to start and nobody else notices too bad. My family and I sure do though...it covers the sink and tub after my shower and styling my hair. I'm armed with some super cute hats and wig for "if" I need to shave it. I'm still hoping I won't lose it all. I'm doing better with it but still sucks every morning dealing with the mess!
On a good note Dr. O measured my lump prior to chemo last week and it had already shrunk....almost in half!! So we're making progress and that makes me optimistic that we really will be done after this one cycle of chemo! So.....hopefully I'm halfway done!! I see her on Monday them have chemo afterward!
Thanks so much for the continued thoughts, prayers and selfless acts from my friends/family. It's so appreciated!! I'm blessed to have such a great support system in my friends, family and co-workers.
I've felt great this week which was a pleasant welcome after last week. In my last blog I'd said the chemo went well and I felt good. The sickness struck me after I posted! I was pretty nauseated and tired the entire week. On top of that they think I had an allergic reaction to my Compizine (med for nausea) so that made things worse and my mouth was sore and raw from the chemo. That made eating/drinking difficult so I ended up pretty dehydrated. However, after a liter of fluids and nausea medicine in my port on Friday I felt much better. Combined with that an a prescription mouthwash that helps numb so I can eat/drink this week is going much smoother!!
I had my lab drawn today, my white count is very low. So I'm now starting on 3 preventitive meds to help me from getting sick. I'm supposed to wear a mask at work (luckily I'm slow right now!) and stay clear of sick people.
I've got my class reunion this weekend and 4th celebrations......so I'm going to arm myself with hand sanitizer and try to keep my distance without being rude :)
That's my week in a nutshell....I've got chemo on Tuesday so I'll update more then!! Hope you and your families have a safe and wonderful holiday!!
I had my first chemo yesterday, it was a long day. Had to be there by 9:15 to meet with my patient financial representative then met with Dr. O'Dea before starting my chemo infusion.
Dr. O'Dea has officially staged me as Stage II A Hodgkins Lymphoma. This means the mass is in 2 area, my neck and then a spot in my chest by my mediastinum. A is the subcategory meaning I've no other symptoms so it's much more favorable prognosis than B.
I had to watch a pre-treatment video, then they pre-medicated me with anti-nausea meds and some stuff to help me relax. Then came the Bleomycin trial to make sure I didn't have a reaction. Then we started the actual medication. I slept a little, watched a little tv, JR and my sister-in-law brought me lunch and I was able to eat. Fininished the treatment up and came on home. I really feel good....a little queasy this morning but not bad.
They do expect me to lose my hair within a couple weeks so we picked out a wig and got some CUTE hats! Not sure what I'll do when the time comes but at least I've got some options to fall back on.
Once again thank you for all the thoughts and prayers and the numerous offers to help. We're so blessed to have such an awesome group of friends and family and tight knit community to come together at times like this.
This last week has been a whirlwind!! I had my port placed Friday, did well with that. I'm a little tender but otherwise good. Then spent the weekend moving friends, bittersweet. I had the opportunity to meet a new friend....one who had Hodgkin's lymphoma. He shared parts of his experience with me and brought me a prayer blanket. This blanket was made by ladies at his church and prayed over while they made it, then blessed at Sunday mass. I was optimistic before but this put my situation in a whole new light....I'm ready to face this monster head on and get on with my life.
Met with the oncologist today. PET scan scheduled for tomorrow. PFT (lung function test) and MUGA scan (for heart function) for Thursday. Then my first chemo treatment on Monday. I'll be receiving ABVD chemo, which is the most typical kind of chemo. Each letter stands for a different medication in the regimen. I'll do a treatment then have a week off then do another treatment but I'll have lab work done weekly to monitor my blood levels. So after my 2 cycles of chemo (each cycle includes 2 treatments) we'll redo the PET scan and reassess if I'm done or if I'll have to continue with some sort of treatment. Dr thinks I'll only have to do 2 cycles of treatments (which is only 4 times!!) so I'm hoping by the end of summer I'll be done with this nightmare.
Thank you all for the prayers and support, it means the world to us.
I am happily married to the love of my life who is also my best friend. We have 2 boys (8 and 5) and our little girl (10 months). I work full time and enjoy spending time as a family and watching my kids grow up.