I’m Coming Home

Today has been good. I got a lot of information, and I’m okay with it.

Mom and I are driving a rental car and Progressive has my car, which should be fixed within the next 3-5 days at no cost to us. Originally, it seemed that this was going to be an issue because Progressive (the insurance company of the guy who hit us) wanted to just cut us a check. No good because then we do not have a rental car; we’d have to find our own repair shop in an unfamiliar city, and the repairs could be more than what Progressive estimated. I figured we’d have trouble when we went this afternoon, but we had zero issues and everything went smoothly. I was shocked and pleased; I hate that kind of conflict and kept sternly rehearsing what to say in my mind. Then, when we went to leave, mom revealed that she called there this afternoon while I was telling Joel about this morning’s doctor’s appointment and already dealt with the situation; she just didn’t tell me. No point in the details, but mom was apparently persuasive.

Now, for the weekly Wed. doctor’s appointment… she confirmed what her nurse casually said to mom on the phone Monday; as long as I do not get sick, my doctor will release me after our Wed. appointment on March 17th. So it’s official, I’m coming home – and pretty soon! So much to do before I go. We have to  pack up all the stuff we accumulated and I have to have my 90 bone marrow biopsy and pass a pulmonary test. I also have to get flu shot and something else I can’t remember. Why a shot? Well, with my new immune system comes the necessity of having to get all my vaccinations again. It’s like being a newborn. So when my kids are getting their shots, so will mommy. However, the bulk comes at my one year anniversary.

In fact, one year was the theme today. With leaving, we have numerous questions. Some major, some minor. We’re still coming up with things to ask, but the following is a list of the information we learned today.

1. My prognosis is good. I’m beyond the “danger zone”; so in other words, no one is concerned that I will die (I figure it’s just easier to be blunt and clear). Nonetheless, my first year is critical. This is when most of my GVH (graft versus host disease) flare ups can and will occur. I have to be very aware of my body and how I feel at all times. If I wake up and feel “off” or “icky,” I have to immediately call my local oncologist and get checked out. It’s the same if I have a pain, get a rash, develop a cough, or basically any change. I can no longer say, “oh, I’ll just wait and see if I feel better tomorrow.” I have to be on top of my health. Flare ups of GVH are expected and are not necessarily a big deal, but it needs to be treated immediately. Waiting is what can hurt me. So my prayer? That I will wake up every day feeling fine and ready to live another day.

2. I can drive when I get home. I haven’t driven since June, so I need to take it slow. The recommendation is to start in a large parking lot.

3. My doctor strongly recommends that I do not return to work for another year. Being a teacher is the main reason. Kids are germinators and she feels I should put off the exposure. I knew I really couldn’t return in August because I needed to recover for the first year after my BMT. However, my one year anniversary is in December so I wasn’t sure if I could or should return in January. My doctor doesn’t want me to and said she’d put that in writing. She also feels that my job would be too fatiguing and that more time is needed. I’m hoping my principal and colleagues will understand. I don’t want anyone to think I’m taking advantage, but returning in poor health or becoming unhealthy because I returned too soon, would not help anyone and only serve to hurt me. On the practical side, working will be problematic due to the following:

• I have to get my blood taken once a week, which fortunately will be done in my oncologist’s office. Moffitt will send him a packet of what to draw each week.
• I have to have a local oncologist’s appointment each month.
• I have to go back to Moffitt to see my doctor once a month in Tampa.
• I have to have more biopsies, but thankfully, they get further apart. After the 90 day one in just a couple of weeks, my next one is at 6 months, then one year, then two years, and then I’m not sure.
• I have to continue taking pretty much all of my medications.

Clearly, it would be hard to work through this; plus, I have to remember that I could have a flare up at any time and that includes first thing in the morning and I’d have to call out or even worse, it could happen while I’m teaching.

4. I’m leaving my Hickman chest line in because I’m still going to have weekly blood draws and I really don’t want to get poked every week with how bad I know my veins can be. My doctor told me many people get a port and remove the Hickman, but no way I want to do another surgery. She also said I can have the Hickman removed whenever I want. Joel’s disappointed. He understands the reason for leaving it in, but he thought I’d return home without it. It is a reminder of illness and I know seeing it can be upsetting, but this is just going to be a long process and the convenience of the device outweighs having it removed just because it would be nice to see it gone.

5. As for wearing my mask, I need to use my best judgment. I do not need to wear it all the time, but I should be precautions, especially around coughing. The doctor said I should always carry a mask around with me.

6. I should probably stay away from most fast food for a year unless I see or know it was made fresh. The key word is “fresh.” The doctor said that it’s food that sits around that causes problems because of food poisoning, but fresh, well-cooked food is safe. Also, apparently milkshakes are really bad. They carry some kind of bacteria or something that could cause my problems, so I have to stay away from those and things like soft serve ice cream machines. When the doctor first said, no fast food for a year; I joked about not being able to eat McDonald’s fries and she actually said that McDonald’s may be the one place I could go to because she believes they have to throw out food after 7 minutes; she going to check with the nutritionist. She again said that if I see them make the fries, it’s okay to eat them.

7. I’m starting Gleevac tonight. I may or may not stay on it but my doctor said that she wants to put me on it because I only had three rounds of chemo while the average is 4-6 rounds. It’s just to be safe and may not be necessary, so it may not be forever.

8. I’m not supposed to change baby diapers, but I can wear a mask and gloves if I really need to change one. We’ll have to see what I can do about taking care of Joshua.

9. I can and should get my tests done for my previous cancer. That means I’ll need to call my oral surgeon and schedule my annual PET and CT scans, and I’ll need to call my OB to get my mammogram prescription.

10. Lastly, my blood work continues to be good. My white counts are good. My hemoglobin is normal (12). My platelets are above 100 (105). My magnesium is 1.5 or above (1.7). I have some things that are a little higher or lower than normal, but nothing is majorly off.

As has become the normal and an amazing blessing, my doctor is very happy with my progress and says I’m doing really well. I may still have a long recovery coming, but the worst is really over so it will be okay. I’m excited to see what each future day will hold and I plan to enjoy every single one. I can’t wait to come home and see all the people I love.

Related posts:

1. I’m tired, but at least I’m home
2. Things Are Good
3. Information Update
4. Jamie Feeling a Little Better
5. A Different Week

Tags: Jamie, Leukemia